Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
https://www.thisisms.com/forum/
sometimes one notices bluish veins under the skin. they may represent other collateral veins that result from the jugular blockages.FlashHack wrote:Okay, my first question for you Dr. S: I was curious if you had occasion to notice any external deformities of the MS patients you have seen. If CCSVI is a congenital malformation, would there be a higher incidence of externally visible malformations? I know that I have a couple (if my kids are reading this, I am not talking my face you clowns!), and I was just wondering if these internal venous malformations might be correlated.
johnny, i feel very uncomfortable with this. Anyone who is doing this procedure should know the answers to these questions. I would be concerned for you.JOhnnybaby248 wrote:Hey dr. S. I have a question for you now I have found someone to do the Liberation treatment for me he is Cardiovascular surgeon the questions I need to ask are
1. what would you say would be the best way to check for ccsvi
I was told they will first do an ultra sound of your neck which takes 20 mins. If they see that one or both veins supplying blood to the brain are compromised they will send you for MRI.
2. should he just check the jugular veins or some where else
3. since I will be his 2nd to have this done he was wondering what would be the codes you use to bill the insurance company so he can do the same
4. Just for my info if my insurance PPO does not cover the liberation treatment what would be cash price
5. do you recommend any kind of literature that I can pass out to him to help him better understand what he should be looking for
6. by allmeans if you need to send me the info by personal message please do
thank dr. S.
if you feel that i missed anything that I should need to advice him on please let me know
i could only give an educated guess.mshusband wrote:Dr. Sclafani:
I know I've read the question before but am not sure if I've seen the answer.
If you have a bad vein on one side, say the left. Is it better to sleep left side up, or left side down (if you're a side sleeper)? Or on your back? Or does it not make a difference?
If it wouldn't make a difference, any insight as to why?
SammyJo wrote:Dr Sclafani,
Maybe this would work for the patient tracking/registery?
I am concerned about how this information is used, whether it is validated and accurate.4) We also request that you join www.PatientsLikeMe.com so that we can all share each others' clinical outcomes and provide much needed research results. Although this does not take the place of Big Pharma or Big Government multi-million dollar studies, we think it will be a great start. The PatientsLikeMe site is used by research organizations to collect data on large numbers of patients. The MS section alone has 18,000 members. It is easy to post your history, symptoms, and treatments and it shows your progress in graphs. Under "CareGivers" please invite "HubbardFound Database" so that we can communicate with you and keep track of your success.
I would like to propose a patient registry, but want it to be IRB approved and dealt with to protect patient rights, patient confidentiality, and patient care.
(link hubbardfoundation.org)
I know the results of yours and other doctor's trials and published results are what will win medical minds, so I don't know how useful the registery would be to the research. It does help patients to evaluate treatments, I have my profile there (link) and I put stents as an MS treatment.
Boy I can relate...hang in there...my oldest is seven and I've been able to talk to her about m.s. and she understand it to some degree. She knows it's why I have to rest and that I'd rather be doing the fun things too. "Yes Day" is also big for us, we celebrate it once a year on their birthdays, in large part because they get more than their share of no's.ssmme wrote: I cried last week when one of them asked why I couldn't take them for a walk and why I always say no when they want to ride their bikes with me.
So is there a certain type of interventional radiologist or vascular doctor who is more suited to the liberation procedure? Someone mentioned on the forums that we should ask about IRs who specialize in stroke. What would be your recommendation as to what subset of IRs to look into? (though I'm still gonna hang on and hope you get your IRB set up and back in business soon!)drsclafani wrote:
you should be asking him questions, not me giving him answers
1. have they ever done angioplasty of the jugular vein before
2. how many
3. how many times have they catheterized the jugular veins
4. how many jugular venograms have they done
5. what is their training, when did they graduate, how much interventional radiology was part of their training.
6. how many angioplasties have they done
7 how many angioplasties of veins have they done
8. have they ever catheterized the azygous vein? How often
9. have they ever treated CCSVI before
10. how many times
11. what type of equipment does he or she use?
12. is it a C-arm or a regular angiography unit
13. Does he have a cardiac arrest cart in his room
14. Has he or she had any complications of this procedure
15. has he or she had any law suits doing interventional procedures
16. will they admit you to the hospital or not
i am sure the army will come up with more questions, i got to back to work
Hmm, I always noticed these quite strong bluish veins on my chest just underneath my neck...drsclafani wrote:sometimes one notices bluish veins under the skin. they may represent other collateral veins that result from the jugular blockages.
i have not noticed or read of any clear association between ccsvi and other vascular malformations yet.
Where do I enlist in the CCSVI army? Sign me up!drsclafani wrote:i am sure the army will come up with more questions, i got to back to work
Oh well, the Canadian CTV called it "Liberation War" (and "Miracle cure"...) - I'd rather fight for real science in a peaceful environmentDonnchadh wrote:Where do I enlist in the CCSVI army? Sign me up!drsclafani wrote:i am sure the army will come up with more questions, i got to back to work
Donnchadh
Well Dr. S. I am the one asking just to make sure the testing is up to par not everyone is familiar with the Zamboni proceduredrsclafani wrote:johnny, i feel very uncomfortable with this. Anyone who is doing this procedure should know the answers to these questions. I would be concerned for you.JOhnnybaby248 wrote:Hey dr. S. I have a question for you now I have found someone to do the Liberation treatment for me he is Cardiovascular surgeon the questions I need to ask are
1. what would you say would be the best way to check for ccsvi
I was told they will first do an ultra sound of your neck which takes 20 mins. If they see that one or both veins supplying blood to the brain are compromised they will send you for MRI.
2. should he just check the jugular veins or some where else
3. since I will be his 2nd to have this done he was wondering what would be the codes you use to bill the insurance company so he can do the same
4. Just for my info if my insurance PPO does not cover the liberation treatment what would be cash price
5. do you recommend any kind of literature that I can pass out to him to help him better understand what he should be looking for
6. by allmeans if you need to send me the info by personal message please do
thank dr. S.
if you feel that i missed anything that I should need to advice him on please let me know
Please do not feel so desparate that you are willing to have anyone do this procedure. I have said this is safe, but it is only safe in the hands of those who are experienced. I make no warranty for all comers and there are a lot of beginners who will try to do procedures and learn on the job. Recently someone sent me some venogram images that were completely wrong. called one side normal (it wasnt) and called the other occluded IJV (it was not the IJV).
PLEASE BE CAREFUL
you should be asking him questions, not me giving him answers
1. have they ever done angioplasty of the jugular vein before
2. how many
3. how many times have they catheterized the jugular veins
4. how many jugular venograms have they done
5. what is their training, when did they graduate, how much interventional radiology was part of their training.
6. how many angioplasties have they done
7 how many angioplasties of veins have they done
8. have they ever catheterized the azygous vein? How often
9. have they ever treated CCSVI before
10. how many times
11. what type of equipment does he or she use?
12. is it a C-arm or a regular angiography unit
13. Does he have a cardiac arrest cart in his room
14. Has he or she had any complications of this procedure
15. has he or she had any law suits doing interventional procedures
16. will they admit you to the hospital or not
i am sure the army will come up with more questions, i got to back to work
I think that the radiologists who focus on the entire body have the most experience with interventions involving veins. while those involved with stroke (interventional neuroradiologists) have some experience with catheterization of jugular veins, they do not have the experience with the large vessel angioplasty needed for this that interventional radiologists have. Also catheterization of the azygous vein and its tributaries is generally been confined to interventional radiologists.So is there a certain type of interventional radiologist or vascular doctor who is more suited to the liberation procedure? Someone mentioned on the forums that we should ask about IRs who specialize in stroke. What would be your recommendation as to what subset of IRs to look into? (though I'm still gonna hang on and hope you get your IRB set up and back in business soon!)
_________________
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />