Aa
Oh What Shall I Do????
Hey all...haven't been around for a while and for that I am sorry...don't know what I have been doing with my time but the last week has been spent fighting that darn icepick again! Grrr...can't stand it but they don't know what to do with me so what is the point in wasting time going to the doc right?!
Anyway, I have been absolutely inundated with phone calls and emails regarding the latest news about CCSVI and whether or not I am going to have a stent put in my neck! ha ha People have been very kind in that they are thinking of me and my friends here but I just tell them to pull back on the reins a bit...we don't know if this is going to work yet or not but when I know, they will know.
So...my Aunt called today to say that she heard about this whole CCSVI thing on the radio and that there is a collaborator here in Edmonton!!! I am contemplating sending the Dr. in charge an email explaining the course of my disease and offering myself up as a patient in his research. (The dr. in charge of this study is the same one that read my last MRI) I checked to see if I would qualify for the research and I do so now it's a matter of making up my mind as to whether or not I can handle a long term study....which this certainly will be, I am sure! The following is a list of FAQ's from the website...has anyone else looked into doing this study?
Frequently Asked Questions (FAQs):
1. What is the difference between an ultrasound (US) and an MRI scan of the jugular veins?
Ultrasound (US) can image the vessel and flow in real time. As such, it can monitor the motion or lack of motion of a valve throughout the cardiac cycle. However, the US does not have the full scope of 3D coverage that MR does nor the in-plane resolution although through plane resolution can be quite high for the vessel wall.
2. Does participating in the CCSVI MS study scan cost anything?
No, it's a research study.
3. How do I make an appointment to get the MRI scan?
Email the appropriate contact at the Institute closest to you.
4. Can I get a copy of the MRI scan for my files?
Yes you will be provided with a CD to take to your neurologist and radiologist.
5. How long is the MR scan?
The MRI scan usually lasts one hour or less.
6. Can anyone be a volunteer?
Usually the age limit is 20-59 years old.
7. Can surgery remove iron to help improve the quality of life for MS patients?
No, the iron we see is in a microscopic form stored by the body. We do not know if it continues to increase after treatment or not. But we can scan the brain to ascertain how much is there at a given time and monitor this over time.
8. Will my MS symptoms reduce if I have a stent put in my jugular vein?
We do not know the answer to this question at this time. We recommend you read the work of Zamboni et al.
9. If I have been diagnosed with Parkinson's can I participate in the MS scan?
Sometimes patients with Parkinson's disease do have iron build up that can be seen with MRI but this was not the intended purpose of this study. You can however inquire locally to see if they would include you as part of another research study.
10. What does CCSVI stand for?
Chronic Cerebral Spinal Venous Insufficiency (CCSVI).
11. What if I only have one (1) jugular vein, is that a problem?
It depends on the efficiency of the other main extracranial cerebral veins. This can be assessed using ultrasound.
12. Can I get my "check up" imaging done at one location rather than the site at which I received the operation?
That is up to the local site that you contact.
13. Do I have to pay all travel and hotel expenses?
If you choose to go to a site for the scan the expenses will be your own responsibility.
14. Do you do surgery on the jugular veins?
Each site will have to decide if there is sufficient evidence to warrant any surgical intervention.
15. Who can I visit that is currently implementing stents?
Dr. Michael Dake at Stanford University has performed these surgeries before.
16. When do you think the MS Society will put CCSVI on their web sites?
The MS societies have a standard review procedure to follow.
17. When do you think this new find of CCSVI will be fact and that doctor's will be become generally aware of the potential problem and treatment?
It is likely that thousands of people will have to be scanned, treated and followed for several years to validate: a) that we can see this problem with either MRI or US or a combination of both; b) if surgical treatment is warranted the patient must be carefully followed; and c) the longitudinal condition of the patient should be followed clinically and perhaps by imaging.
18. What will happen with the McDonald Symptom Chart?
These criteria are regularly reviewed. If there is a breakthrough in the future, the medical community will deal with it appropriately.
19. Does having a cardiovascular problem and MS relate to CCSVI?
We do not know the answer to that question at this time.
20. If I had surgery that affected my jugular vein and then developed MS, is this related to CCSVI?
We do not know the answer to that question at this time.
21. If nothing is found with MRI does that mean I don't have CCSVI?
The original work was done with ultrasound. In order to duplicate the work of Zamboni you would have to have the same US procedure described in his papers. Having both an MRI and US is probably the best approach.
22. What are the conditions for participating in the CCSVI research study?
Inclusion criteria: Subjects should have a clinically definite diagnosis of MS with a relapsing-remitting (RR), secondary progressive (SP), primary progressive (PP) disease phenotype, or clinically isolated syndromes (CIS) suggestive of MS with the first clinical attack in the preceding 3 months and at least four focal abnormalities on T2WI. Other conditions include: aged from 20-59 years old, not pregnant or nursing, able to understand and sign a consent form and no contraindication for MRI.
Exclusion criteria: History of other major illness, a prior known neurological disorder other than MS, history of substance abuse, any contraindication to MRI (such as metal fragments in eyes, pacemaker, other non-MR compatible implanted devices), claustrophobia, pregnancy, patients with moderate to severe kidney disease that have impaired ability to filter the contrast agents or those who are nursing, allergy to MRI contrast agents, younger than 20 or older than 59, and unable to understand and sign an informed consent.
continued on next entry....
Anyway, I have been absolutely inundated with phone calls and emails regarding the latest news about CCSVI and whether or not I am going to have a stent put in my neck! ha ha People have been very kind in that they are thinking of me and my friends here but I just tell them to pull back on the reins a bit...we don't know if this is going to work yet or not but when I know, they will know.
So...my Aunt called today to say that she heard about this whole CCSVI thing on the radio and that there is a collaborator here in Edmonton!!! I am contemplating sending the Dr. in charge an email explaining the course of my disease and offering myself up as a patient in his research. (The dr. in charge of this study is the same one that read my last MRI) I checked to see if I would qualify for the research and I do so now it's a matter of making up my mind as to whether or not I can handle a long term study....which this certainly will be, I am sure! The following is a list of FAQ's from the website...has anyone else looked into doing this study?
Frequently Asked Questions (FAQs):
1. What is the difference between an ultrasound (US) and an MRI scan of the jugular veins?
Ultrasound (US) can image the vessel and flow in real time. As such, it can monitor the motion or lack of motion of a valve throughout the cardiac cycle. However, the US does not have the full scope of 3D coverage that MR does nor the in-plane resolution although through plane resolution can be quite high for the vessel wall.
2. Does participating in the CCSVI MS study scan cost anything?
No, it's a research study.
3. How do I make an appointment to get the MRI scan?
Email the appropriate contact at the Institute closest to you.
4. Can I get a copy of the MRI scan for my files?
Yes you will be provided with a CD to take to your neurologist and radiologist.
5. How long is the MR scan?
The MRI scan usually lasts one hour or less.
6. Can anyone be a volunteer?
Usually the age limit is 20-59 years old.
7. Can surgery remove iron to help improve the quality of life for MS patients?
No, the iron we see is in a microscopic form stored by the body. We do not know if it continues to increase after treatment or not. But we can scan the brain to ascertain how much is there at a given time and monitor this over time.
8. Will my MS symptoms reduce if I have a stent put in my jugular vein?
We do not know the answer to this question at this time. We recommend you read the work of Zamboni et al.
9. If I have been diagnosed with Parkinson's can I participate in the MS scan?
Sometimes patients with Parkinson's disease do have iron build up that can be seen with MRI but this was not the intended purpose of this study. You can however inquire locally to see if they would include you as part of another research study.
10. What does CCSVI stand for?
Chronic Cerebral Spinal Venous Insufficiency (CCSVI).
11. What if I only have one (1) jugular vein, is that a problem?
It depends on the efficiency of the other main extracranial cerebral veins. This can be assessed using ultrasound.
12. Can I get my "check up" imaging done at one location rather than the site at which I received the operation?
That is up to the local site that you contact.
13. Do I have to pay all travel and hotel expenses?
If you choose to go to a site for the scan the expenses will be your own responsibility.
14. Do you do surgery on the jugular veins?
Each site will have to decide if there is sufficient evidence to warrant any surgical intervention.
15. Who can I visit that is currently implementing stents?
Dr. Michael Dake at Stanford University has performed these surgeries before.
16. When do you think the MS Society will put CCSVI on their web sites?
The MS societies have a standard review procedure to follow.
17. When do you think this new find of CCSVI will be fact and that doctor's will be become generally aware of the potential problem and treatment?
It is likely that thousands of people will have to be scanned, treated and followed for several years to validate: a) that we can see this problem with either MRI or US or a combination of both; b) if surgical treatment is warranted the patient must be carefully followed; and c) the longitudinal condition of the patient should be followed clinically and perhaps by imaging.
18. What will happen with the McDonald Symptom Chart?
These criteria are regularly reviewed. If there is a breakthrough in the future, the medical community will deal with it appropriately.
19. Does having a cardiovascular problem and MS relate to CCSVI?
We do not know the answer to that question at this time.
20. If I had surgery that affected my jugular vein and then developed MS, is this related to CCSVI?
We do not know the answer to that question at this time.
21. If nothing is found with MRI does that mean I don't have CCSVI?
The original work was done with ultrasound. In order to duplicate the work of Zamboni you would have to have the same US procedure described in his papers. Having both an MRI and US is probably the best approach.
22. What are the conditions for participating in the CCSVI research study?
Inclusion criteria: Subjects should have a clinically definite diagnosis of MS with a relapsing-remitting (RR), secondary progressive (SP), primary progressive (PP) disease phenotype, or clinically isolated syndromes (CIS) suggestive of MS with the first clinical attack in the preceding 3 months and at least four focal abnormalities on T2WI. Other conditions include: aged from 20-59 years old, not pregnant or nursing, able to understand and sign a consent form and no contraindication for MRI.
Exclusion criteria: History of other major illness, a prior known neurological disorder other than MS, history of substance abuse, any contraindication to MRI (such as metal fragments in eyes, pacemaker, other non-MR compatible implanted devices), claustrophobia, pregnancy, patients with moderate to severe kidney disease that have impaired ability to filter the contrast agents or those who are nursing, allergy to MRI contrast agents, younger than 20 or older than 59, and unable to understand and sign an informed consent.
continued on next entry....
Well...nothing! I never heard back from anyone and have not pursued it any further as we here in Alberta were told that they have been inundated with phonecalls, emails and letters regarding this testing and they just don't have the time to check everything.
I have an appointment with my neuro in April and I am going to ask him about it then in person and if I get any pertinent answers, I will be sure to let you know.
Take Care!
Rena
I have an appointment with my neuro in April and I am going to ask him about it then in person and if I get any pertinent answers, I will be sure to let you know.
Take Care!
Rena
Well Rena whats the verdict now? I am very interested in having the liberation procedure done. I have started a group on facebook called CCSVI Edmonton any info woud be great
I probably will, as long as it doesn't involve too many visits because of the travel involved. I guess for now we stay tuned...........
Yep...it sure is! Dr. G. was on CTV news the other night stating that they will be accepting people for a study but that they would appreciate the time to get things set up before they decide who will be asked to be involved. Are you going to apply for it?
Rena
Rena
good for you... let us know what come from this.. I'm curious myself as too taking the study.. if they would work with PPMS
take care Rena... haven't seen you around..
wobbly
take care Rena... haven't seen you around..
wobbly
Good to see you! I agree that this CCSVI is fascinating and just wrote a big discussion of my thoughts over on shoshin's thread. I am also considering volunteering to be in a study.
NiCee - There is really nothing to be brave about. The studys are using a non-invasive test called an ultrasound. Therapy (dilation or stenting open the veins is not a part.) This is no risk.
Quix
NiCee - There is really nothing to be brave about. The studys are using a non-invasive test called an ultrasound. Therapy (dilation or stenting open the veins is not a part.) This is no risk.
Quix
Well, I sent the email to the Radiologist that is running this study and hopefully I will get a positive response! It kind of makes me wonder about this CCSVI...do you remember the trouble I was having with my heart rate dropping when I would exercise when I was at the lung clinic? I wonder if there could be any relation to a blocked jugular vein? This is only a small part of all the questions I have about this...it's all so confusing but at least they are working on it right?
I will try not to be such a stranger Lulu...just busy with this and that and Wii of course! ha ha
Lots of Hugs,
Rena
I will try not to be such a stranger Lulu...just busy with this and that and Wii of course! ha ha
Lots of Hugs,
Rena
Dear Rena,
What a good idea for you to follow through and talk to this doctor. Shoshin also has a post going about this - she has an appt. at Stanford in early December.
You're so right about this being a hot topic - eveyrone wants to talk about it. My kickboxing instructor had printed copies of the story in The Mail for us tonight. She was so excited that there may be a solution to our problems.
Keep us posted what you hear, ok?
And please don't be a stranger around here.
be well,
Lulu
What a good idea for you to follow through and talk to this doctor. Shoshin also has a post going about this - she has an appt. at Stanford in early December.
You're so right about this being a hot topic - eveyrone wants to talk about it. My kickboxing instructor had printed copies of the story in The Mail for us tonight. She was so excited that there may be a solution to our problems.
Keep us posted what you hear, ok?
And please don't be a stranger around here.
be well,
Lulu
YOU ARE VERY BRAVE.
I WENT TO THE SIGHT YESTERDAY AND SPENT HOURS READING AND READING AND WATCHING THE VIDEOS.
I FIND IT VERY INTERESTING BUT SCARY W IT BEING SUCH A NEW STUDY.
BUT I AM VERY NEW AT THIS MS THING AND IM SURE IF IM TIRED OF IT ALREADY,
YOU ARE TOTALLY READY TO TRY SOMETHING.
I HAVE OTHER THINGS TO DEAL W RIGHT NOW TOO SO I DON'T FIT THE CRITERIA. BUT I WOULD LOVE TO HEAR HOW IT GOES FOR YOU! PLEASE CONTACT ME AND KEEP ME POSTED!!!!!!! I MAY BE INTERESTED IN THE FUTURE IF OR WHEN THIS BLEEDING ON MY BRAIN IS TAKEN CARE OF!!
THANK YOU AND ILL BE PRAYING ALL GOES WELL FOR YOU!! NiCee
I WENT TO THE SIGHT YESTERDAY AND SPENT HOURS READING AND READING AND WATCHING THE VIDEOS.
I FIND IT VERY INTERESTING BUT SCARY W IT BEING SUCH A NEW STUDY.
BUT I AM VERY NEW AT THIS MS THING AND IM SURE IF IM TIRED OF IT ALREADY,
YOU ARE TOTALLY READY TO TRY SOMETHING.
I HAVE OTHER THINGS TO DEAL W RIGHT NOW TOO SO I DON'T FIT THE CRITERIA. BUT I WOULD LOVE TO HEAR HOW IT GOES FOR YOU! PLEASE CONTACT ME AND KEEP ME POSTED!!!!!!! I MAY BE INTERESTED IN THE FUTURE IF OR WHEN THIS BLEEDING ON MY BRAIN IS TAKEN CARE OF!!
THANK YOU AND ILL BE PRAYING ALL GOES WELL FOR YOU!! NiCee
SOOOOOOoooooooo....
The following is the email I am pondering sending to the Dr. in charge of the study:
My name is Rena and I am currently a patient of Dr. G. I was diagnosed with Multiple Sclerosis in 1993 and my disease was deemed to be in remission until October 2006. I have since been diagnosed as having Secondary Progressive Multiple Sclerosis. I am not on any disease modifying drug although I am on various other medications to help control the nerve pain as well as my difficulty with speech. I have no contraindications to having an MRI. I have been diagnosed as having COPD and Asthma but it is under control with medications.
I happened to recall your name from an MRI report I had done on November 19, 2007. The impression at that time was, "There are a number of white matter hyperintensities. These are in typical distribution for the demyelination of Multiple Sclerosis. This had been confirmed previously but this MRI was done due to recurrent daily diplopia left Paratrigeminal Neuralgia.
The medications I am currently taking are as follows:
Prevacid 10mg once daily
Elavil 40mg daily
Citalopram 20mg daily
Carbemazepine 300mg tid
Amantadine 100mg twice daily
Singulair 10mg daily
Symbicort twice daily
Spireva once daily
I would be very interested in assisting in a research study for CCSVI. I can only imagine the loads of people with MS that are interested in getting involved with this study. I only hope that should I qualify to assist in possibly finding an answer for this monster we call Multiple Sclerosis, that you will consider me as a candidate.
I can be reached at (***) ***-****. I live in Edmonton and have easy access to the University of Alberta Hospital. I look forward to hearing from you in the near future regarding the CCSVI study.
Sincerely,
Rena * *****
The following is the email I am pondering sending to the Dr. in charge of the study:
My name is Rena and I am currently a patient of Dr. G. I was diagnosed with Multiple Sclerosis in 1993 and my disease was deemed to be in remission until October 2006. I have since been diagnosed as having Secondary Progressive Multiple Sclerosis. I am not on any disease modifying drug although I am on various other medications to help control the nerve pain as well as my difficulty with speech. I have no contraindications to having an MRI. I have been diagnosed as having COPD and Asthma but it is under control with medications.
I happened to recall your name from an MRI report I had done on November 19, 2007. The impression at that time was, "There are a number of white matter hyperintensities. These are in typical distribution for the demyelination of Multiple Sclerosis. This had been confirmed previously but this MRI was done due to recurrent daily diplopia left Paratrigeminal Neuralgia.
The medications I am currently taking are as follows:
Prevacid 10mg once daily
Elavil 40mg daily
Citalopram 20mg daily
Carbemazepine 300mg tid
Amantadine 100mg twice daily
Singulair 10mg daily
Symbicort twice daily
Spireva once daily
I would be very interested in assisting in a research study for CCSVI. I can only imagine the loads of people with MS that are interested in getting involved with this study. I only hope that should I qualify to assist in possibly finding an answer for this monster we call Multiple Sclerosis, that you will consider me as a candidate.
I can be reached at (***) ***-****. I live in Edmonton and have easy access to the University of Alberta Hospital. I look forward to hearing from you in the near future regarding the CCSVI study.
Sincerely,
Rena * *****
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