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Julie  Stachowiak, Ph.D.

How Does Your Neurologist Talk About CCSVI?

By February 29, 2012

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I have some questions that I am dying to know the answers to and am hoping that some of you will share your story with us:

  • For those of you who have gotten treated for chronic cerebrospinal venous insufficiency (CCSVI), what was your doctor's reaction when you said you wanted to get the treatment?
  • Did your doctor participate in helping you find a place to get treated?
  • Did he or she communicate with the doctor who performed the test and/or procedure?
  • How did your relationship change after getting the treatment?
  • Has your doctor been interested in your progress after the treatment?

And, for those of you who are just considering treatment for CCSVI:

  • What did your doctor say when you brought it up?
  • Do you expect any support from your doctor if you move forward with the treatment?

I am just very curious to know if docs are actively participating in their patients' medical care, even if they may not agree with the choices that their patients make, or if they tend to "wash their hands of the matter" (and of their patients) if the patient pursues CCSVI treatment. In my opinion, even if docs do not agree with their patients' choices, they still need to pay attention to what their patients are doing and what the results are.

Please share your story with us in the comments section below.

Comments
February 29, 2012 at 11:20 pm
(1) nektaria says:

he doesnt talk about it

February 29, 2012 at 11:24 pm
(2) Michael says:

“What did your doctor say when you brought it up?”

I brought it up by explaining that my mother (also with MS, as I am) had traveled to India to have the procedure done.

He told me she should have spent the money on a world cruise instead. At least he didn’t laugh, as his attitude seemed to imply he would have done absent good self-control.

“Do you expect any support from your doctor if you move forward with the treatment?”

Support? Hard to say. He’s been supportive of everything else I’ve thought up and tried (cannabis for symptom control, for example)… but he’s dismissive of this procedure – in the abstract, at least. I suspect his inner scientist will want to follow me if I go there, but his inner skeptic seems so far to be in firm command.

February 29, 2012 at 11:30 pm
(3) Sandra Whitaker says:

My neurologist just told me it was all a hoax and waste of money, after two treatments one in Dec 2010 and the 2nd in Dec 2011 I’m 95% symptom free so unsure I”ll ever see a neuro again, they’ve been working on the unprven auto-immune theory for decades so it’s time for them to realise this is a vascular disease I’ll stick with my vascular surgeon and IR for treatment and testing:-)

February 29, 2012 at 11:31 pm
(4) Michael says:

It should be noted in addition to the above that “my doctor” is a neurologist who’s specialized in MS for many years and enjoys a very good worldwide reputation.

February 29, 2012 at 11:33 pm
(5) P Murray says:

My neurologist, at a very reputable clinic in NYC reacted sarcastically, She went on to insinuate that she knew Dr. Zivadinov at the Buffalo imaging center and he was gradually giving up on the MS/CCSVI connection.That all the excitement was dying out. Of course I took it with a grain of salt but it was daunting to see the fangs come out.

February 29, 2012 at 11:34 pm
(6) Sana D. says:

He never mentioned a thing. I found out about it just recently and wen i brought it up he went totally against it . Said he would never reccomend it and it could kill me. I dont think he would ever support me if i went through with it.

February 29, 2012 at 11:37 pm
(7) Leigh says:

Wouldn’t they lose money if you get better without all the meds.

February 29, 2012 at 11:39 pm
(8) Dagmar Lofts says:

My neuro has never taken the treatment seriously even though I told him I had venous issues before MS so I was curious

February 29, 2012 at 11:44 pm
(9) Stephanie says:

My neurologist wouldn’t even talk with me about it. He acted like he didn’t even know about CCSVI. After I explained what it’s about, he said it is a hoax and he didn’t talk about it anymore. I have had the procedure but I have been thinking about it. I expected my neurologist to at least know about CCSVI and discuss it with me more than he did.

February 29, 2012 at 11:45 pm
(10) Jason says:

My Doctor told me he had looked into it and read everything about then told me the only reason some people felt better after was nothing more then a placebo effect. He then changed the subject right away.

February 29, 2012 at 11:46 pm
(11) Stephanie says:

Correction to my previous statement: I have not had the procedure.

February 29, 2012 at 11:59 pm
(12) carol Schumacher says:

Hi julie,
My doctor has been pretty great. She is skeptical and worried for me because of possible adverse events. I had an adverse event (stent) and she still was interested. she made a special appointment to check me 2 weeks after and has kept up by e-mail. She listened to all that I said and agreed that it was the best option for me. she wrote the referral for CCSVI treatment and since I was interested in a clinical trial and understood the risks she supported my decision. My EDSS score has not changed in 10 years. I feel a lot better and question if EDSS is the right measure for CCSVI. I no longer use a cane or scooter which I would have thought should effect the score, but she just shrugs when i ask why it doesn’t reflect all the improvements I feel. i think it is confusing data for her too. I dont think neurology has figured out how to measure MS. i think that is why they have all these tests and fight over which one works best. My neurologist really cares about me and wants the best for me and even though she has never helped my MS I do very much appreciate her concern. If I have to pick one doctor, however I would pick my interventionalist. he has follows me and cares for me too and helped my MS a lot!

March 1, 2012 at 12:02 am
(13) Lana says:

My dr said ccsvi is not worth it and will not work. She says it has not been tested enough and will be a waist of time. Although she does say if I am that passionate about it I should talk to a dr that can do it but I will have a hard time because she said it is not being done in Texas near where I am.

March 1, 2012 at 12:06 am
(14) Faith says:

After a yr of research, I saw neuro and asked his opinion. He said “It’s a scam, like bee venom.” I said no more. I had several surgeries then went back to him. He and his RN were cold and unfriendly. I said I had surgery and showed them some improvements. They got colder, barely did any exam. All he asked was who did surgery. I gave no name. I’ll see him soon out of curiousity if he changed his tune any and find another.

March 1, 2012 at 1:06 am
(15) M. Clarence says:

We do not talk about it; sure he will not support it.

Besides, Medicare does not cover it.

March 1, 2012 at 4:59 am
(16) Jak says:

Just how it is dangerous…….Two people have died you know i’m told!! He know’s that I have my own theory on MS and it’s not the same as his!!

March 1, 2012 at 5:49 am
(17) Verna Halloran says:

My neuro initially told me not to go, that would probably cause a stroke and could be fatal and that overall the science behind it did not make since. I went and returned to him 6 months later almost dancing with dramatically improved results. He said I was the 20th of his patients to have been treated with 18 showing improvements but 2 getting worse. He said he was very happy to see me feeling better and didn’t care if it was the procedure or all in my head as long as I felt better. I’ve since then had many of the symptoms return and am planning a 2nd treatment. I told my neuro and explained why it couldn’t possibly physically as to why it worked or be explained and then told me if he had the cure he would tell me not to go but with the results I had last time that if the procedure made me feel better then he didn’t care if it physically worked or not as long as I felt better. He told me not to worry that he would still be there to look after me when I got home.

March 1, 2012 at 6:57 am
(18) Monica says:

My neurologist said that the procedure was “Phoney- Boloney” I was appalled because he only looked it up online while I waited for our appointment. I was very disappointed. I still went for the procedure and I feel great.

March 1, 2012 at 7:14 am
(19) Mike Damizia says:

My Neurologist won’t even acknowledge that it exists, lol. Even though I’ve had the procedure, without her consent & have felt the best I have in 10 years & even had no active lesions on my last MRI. It was an experimental procedure when I had it done & since then the hospital has shut down the Dr. doing it, for fear of lawsuits. I’ve restenosed since then (2010) & am pretty much back to where I was, since then but, can’t afford to have it redone since my Insurance & Medicare will not help cover it.

March 1, 2012 at 7:36 am
(20) Bweb says:

I am in a CCSVI study at the University of TX and am using the neurologist there. He is running the study but does not recommend at this time having the procedure done anywhere. I think they need to understand this more and develop stents safer for the carotid before i would feel comfortable having the procedure. I made it a point to find a study.

March 1, 2012 at 7:50 am
(21) CJ says:

I’ve never discussed this with my neurologist, though he is aware that I was treated. After being a 6-6.5 on the EDSS Score for the last number of years, after treatment he scored me at a 5. He wrote a note to my family doctor saying I was no better. My own family doctor scoffed at his scepticism, as he realizes that there were significant clinical improvements. He told me to disregard what the neurologist said. Needless to say, I don’t have anything to do with the MS clinic where I live. I have better things to do with my time than to be insulted by an egotistical maniac ! My family doctor agrees !

March 1, 2012 at 8:07 am
(22) Anna Tessier says:

When I first saw him about it when it came out he didn’t know much about it, but I had tons of information. He actually gave me his email address because my husband had a connection in Italy to Zamboni’s team who done the surgeries but were not doing any more.

Then a high schhol friend had it done in Albany, NY with great results she game the name and number of the clinic and I was put on the waiting list. I was called Dec. 2011 the day before my nero appt. how funny was that.

My neruologist was all for it. He is actually one of the doctors in Sask. who will studying and watching the trial patients. I had the treatment on Jan, 11, 2012. The day before they announced the trial, but here is the funny part I had the treatment in Albany, NY where they are doing the trials.

Iam feeling fantastic all symtoms are gone including my migraines, which I was getting 3 to 4 times a week. By the way I have slow progressive MS. The have taken me off my MS meds, High blood pressure pills and cut my antideppresant dosage in half. That is the start in another month they are going to wean me off my migraine preventive meds. I say woo hooo soon no meds except for aspirain.

March 1, 2012 at 8:14 am
(23) Rhonda Z says:

I was treated early, in 2009. My neurologist refused to discuss it with me and insisted he would not give me a referral. Luckily, I didn’t need one. I have never returned to see a neurologist since. There is nothing they can do for me except prescribe lots of drugs with horrible and sometimes deadly side effects. My IR is the only person who has helped ease my symptoms. My GP was helpful with follow-up care and is very interested in my improvements. I have several friends who are doctors who have watched the remarkable recovery and are amazed. It seems most doctors are intrigued… all but the neurologists. And they wonder why we don’t have any faith in them! CCSVI has saved my life.

March 1, 2012 at 9:35 am
(24) Penny says:

My neurologist is in Ottawa Canada and known throughout the world for his rude and simplistic views on CCSVI. I told him of my treatment (in Albany NY Sep. 2010) and gave him all the details from my IR. These were, I imagine never looked at. I then had a 50 minute debate with him about the procedure and how it helped with bloodflow through the brain and how it had helped me. He had no real argument except to keep repeating off the cuff remarks like – its like having bee stings and we haven’t seen improvements in EDSS. He would not give me a followup MRI even though it was 6 years since my last one. He then took me off my DMD’s saying I was stable but not mentioning any other reason. He told me the IR’s were not communicating with the neurologists and didn’t like it when I suggested that it needed to be a two way street. I will continue to see him yearly as I am not intimidated by him and feel I can be helpful in feeding him information. One day he might see the light!

March 1, 2012 at 9:53 am
(25) Nicole says:

My amazing neuro has been nothing less than supportive and curious since I first approached him about CCSVI in Dec. 2009. He not only knew about CCSVI, but told me not to travel to NY to be tested- I would be tested and treated right at his hospital!
That first treatment was too conservative, but I still had amazing, if short-lived improvements.
I found another IR in my area who is now my main man. My neuro is always anxious to hear how things are going.
When I saw him last, he was excited to tell me that Robert Fox had just been in town and told his staff about his, now public, autopsy study.
My neuro is a rare jem. I am sorry that I need him in my life, but count my blessings that I found a winner.

March 1, 2012 at 10:16 am
(26) katcam says:

My last neurologist was a nice enough fellow but completely dishonest. When I raised Dr. Zamboni’s work to him, he said Dr. Zamboni was being shut down by his own hospital. After that whopper I had zero respect. Why tell a blatant lie? In this modern age where information flows so freely you’re going to be exposed (as many of the more vocal opponents have).

March 1, 2012 at 10:19 am
(27) d mitchell says:

My neurologist said she was very open minded but when she looked at the studies, she was skeptical about it. Said that all the results people were claiming were anecdotal and were all in their heads. Not real. That they were expecting results, so they imagined they had them. Huh?

March 1, 2012 at 10:24 am
(28) Jeanne says:

Politely smirked, nodded, said that’s not proven, has caused deaths when stent was used, is invasive, and dangerous. When I insisted on MRV and Doppler ultrasound, he reluctantly agreed but only because I emphasized that I had pulsing, ringing, and pressure in my head, and that it might be a separate condition from MS. Upon seeing the abnormal results of MRV and US and recommendations for venogram, he discounted it, and scoffed at the dr. saying “he’s a radiologist!” Since then, I had the procedure, on my own, and doing great. We’ll see if I still have a neuro when I tell him about it.

March 1, 2012 at 10:27 am
(29) Amy Junes says:

My husbands neurologist prior to treatment verbalized he was excited to see results of research. Prior to the next visit my husband was accepted into a trial, was treated, and had improvements. At the next visit his neurologist was very angry and said my husband was lucky to be alive, told him he was worse not better and that the improvement in lack of tremors and lack of heat intolerance were all placebo effects and that he wasnt going to actively treat his disease to let CCSVI stand on it’s own. We do continue to go to him and he continues to belittle CCSVI and is not interested in knowing how it has improved his quality of life. My husband had to be retreated after return of tremors and other things that got worse, but we are not sharing any of this in fear of his reaction. We heard that this neurologist spoke about both of us at a MS society conference about how angry he was at us because my husband got treated. We feel the need to stay with him because he should face CCSVI does indeed help symptoms associated with MS.

March 1, 2012 at 11:38 am
(30) Tammy Schneider says:

I found out about CCSVI on Internet in Feb.. Decided to take proactive action of my own so made appt after deciding over a couple of months, I called my Dr. And spoke with one of nurse-line nurses. Nurse called me back went one and on and on about how risky.the procedure was. Then went on to say the Dr. Even did it to his own wife. Very unprofessional. Instead she could have said dr. Doesn’t agree with the procedure or findings. Research is still too new. I haven’t been back and had paperwork sent to my family Dr. I will see my Dr when I can walk in unaided. Several more months of PT. I did quit my DMD. Hampster’s ovaries, really?!?!?!?!

March 1, 2012 at 12:19 pm
(31) Lori Batchelor says:

When I first mentioned it to him in Feb./10 at my first (yearly) appointment after the story broke in Nov./09, he said “There’s not enough evidence” and didn’t want to discuss it any more–even though I felt it was important for me because of a strong family history of vascular disease.

In March/11 (one week before my appointment for CCSVI treatment out of the country)–he again dismissed it, even though there was much more evidence available, so I didn’t even bother telling him I was going for treatment since it’s a vascular treatment any way and not specifically a treatment for MS. Fortunately, my g/p was very supportive and couldn’t understand why Canada was refusing even testing for people with MS in Canada.

I see my neurologist in one week for the first time since my treatment (although I know from friends who also see him that he knows I’ve had the treatment–they all raved to him about my improvements!). I’m curious to see if he notices my remarkable visible improvements in balance and drop-foot. I’ll probably mention that my heat intolerance is gone–from lukewarm showers to hot tubs–and no weekly “MS” headaches in a year! I wonder if he’ll just put off my improvements to the “placebo effect”–even though nothing else ever worked for me and he has seen me steadily decline for over 20 years…we’ll see…..

March 1, 2012 at 1:12 pm
(32) Ed says:

He said that Dr Zamboni was skating on thin ice! Clever response, but he knows nothing about the treatment.

I had the procedure and restenosed, but I did see improvement initially. I believe it is a viable therapy. I won’t give my Neuro the satisfaction of telling him I had the procedure and it did not have lasting results.

He has a similar opinion of LDN, which has helped me. It is Avonex or Copaxone that he endorses and nothing else is effective, including diet, supplements, etc.

Pretty close minded

March 1, 2012 at 2:15 pm
(33) June Selvig says:

This is the first I’ve heard of it, but I suspect Doctors and pharmacies would not like it because it would cut into their profits.

March 1, 2012 at 2:51 pm
(34) jeanj says:

I found an IR out of state (bigger city). He referred me back to a local IR so it would be covered by insurance. Had the procedure 11/2010. Everything improved. Have not re-stenosed. Neurologist was not happy! At subsequent visits, we do not discuss it.

March 1, 2012 at 10:08 pm
(35) Ron says:

At MS clinic in TO my Dr scrunched up his face and shook his head “no” when I asked what he thought about the new treatment. He said I should stay on Avonex (even though I was complaining that I wasn’t tolerating it). I asked about LDN and he asked me what it was. I asked about vit.D and he said the treatment I’m on is what he recommends (Avonex). It was a non-starter for discussion. I asked what’s on the horizon for me. He said they are always working on new drugs. Always a deflating yearly visit that is little more than a foot scratch, a tuning fork and a hammer test then see you in a year.

March 1, 2012 at 10:18 pm
(36) Vicki says:

My Neuro fails to see how it can anything to do with MS. He very quickly changes the subject. I have been treated and am doing well. I have decided to treat my vascular condition as just that. One day when research shows we were right I will rub his nose in it. Meanwhile he thinks my improvements are all due to Copaxone. Ignorance is bliss!

March 2, 2012 at 10:32 am
(37) Maggie says:

I had brought up CCSVI to my neurologist back in 2009 and he said it was nothing. He said he heard that Dr.Zamboni’s wife didn’t really have MS. He also said that about Montel Williams. So then I went back in 2010, WHY I DON”T KNOW, but was hoping that since I had positive results for CCSVI through a doppler ultrasound that he’d take it more seriously. Uh no. Not at all. He barely read the first sentence and said I thought I told you this was a sham and they are giving you false hope. Seriously, I felt my heart break at that moment and started to 2nd guess my self. Ok that lasted about one minute and I knew I was gonna have to do this all on my own. Since then I have not been back. My procedure is scheduled for April 11, 2012.

March 2, 2012 at 2:15 pm
(38) chris says:

Neuro said ‘there is a high rate of restenosis’ so I connected with other patients and pursued treatment
10/2010 and 2/2011: balloon angio treatment. Improvements 1. throat tightness gone 2. shortness of breath when speaking too long resolved, 3. no more fatigue (did take 100mg Provigil and now take none!). 4. Cognitive fog cleared. short term memory sharp. 5. Vision oddities fixed: blurry/wavy spots when focusing. When waking at night with eyes closed, would see lightning bolt ripples in my eyelids
6. My right hamstring completely loosened and now soft. For at least 12 years, I had a painful knot in this hamstring that couldn’t be worked out with massage or the 60 to 80mg of Baclofen that I took everyday. I now take 20mg per day as prevention. Really great news: I have the bladder of a 30year old even though I’m 50.
I never returned to my initial neuro but did go back to my secondary neuro since Mayo clinic was performing the Dopplar/MRV as per protocol. Unfortunately, both of these tests didn’t show the real picture that the venoplasty revealed. Major issue here is that noninvasive testing IS NOT showing the real picture! My severe Azygos stenosis would never have been detected by Dopplar/MRV
In the end, both neuros said the usual: This is dangerous, people have died, it shouldn’t be pursued outside of a clinical trial(without offering a trial for me to participate in!!!). But we’re happy for your results. Neuro who I saw after treatment read the treatment report and acted unimpressed. Her remark is that IRs are just proceduralists.

March 2, 2012 at 2:59 pm
(39) Patricia Grace-Farfaglia says:

My neurologist does research on the different pharmaceutical treatments, but is open to discussing my CCSVI/MS progress. Sure, he told me about the rate of stenosis, danger, bla-bla-bla, etc. But he took a look at my symptoms and my recent MRI and seemed surprised how well I am doing. Since this is not the experience of a few other patients who had the treatment, he remains skeptical. I continue to discuss research with him. I attach new papers to my emails. More papers are being published by BNAC (authored by a neurologist), so his opinion may change over-time.

March 2, 2012 at 4:06 pm
(40) Shirl says:

My neuro initially got angry and pounded his fist on his desk when I told him I may go outside Canada for treatment. I asked him why he didn’t want me to go, and he replied, “I don’t want my patients dying”. When I returned with success in Mexico for being treated for ccsvI, I told him of my benefits and he told me he was happy for me. I have seen him at least 3 times since then and more of his patients have been treated. He does not indicate his thoughts on it other than he is happy that I am happy. He has done studies with Gilenya and told me those patients were all doing very well on it.

March 2, 2012 at 4:36 pm
(41) Joan Beal says:

Hi Julie–
Glad you are asking this question. Jeff’s neurologist is not impressed, even though he was the first treated in the US 3 years ago, has had a reversal of gray matter atrophy on MRI, and no longer takes baclofen. He has told her about his relief in fatigue, heat intolerence, spasms and cog fog. And she says he is “just lucky.” That MS is unpredictable, and his improvements are most likely just his particular disease course. She has seen his MRIs, and while she is happy for him, she believes it is not due to his venoplasty. We had hoped she might have more of a curiosity, but she is content to view this as some sort of placebo (albeit a 3 year placebo that regrew gray matter)

For those interested in our journey, I made a short movie, which is entered in the American Academy of Neurologists’ Film Festival, linked below. I hope we might open some eyes to the vascular connection of MS. There is a major Semmelweis Reflex to this research…but time and science will overcome this, I’m sure.
http://www.youtube.com/watch?v=Z_IGQrhyAAE&list=PL

March 4, 2012 at 7:18 pm
(42) Nicki Watts says:

My neurologist told emphatically NOT to do it. He said that was something that was very experimental and needed to go through clinical trials. He said it was just another thing I learned about on the internet and knew nothing about. He told me a few people had died from it. I said what about Tysabri? Quite a few people died from that!

When I had it done without his approval, he was amazed at my improvement, especially the loss of my tremendous fatigue and improvement in heat intolerance. He was upset that I had gone behind his back and had it done, but had to admit that I had had improvements. I have since left after 12 years with him because I was so disgusted with his head in the sand attitude. I continue to send him videos and update him on what is happening in the CCSVI world.

I’m pretty discouraged by the neurological community these days and truly believe they are all about the money, and really don’t care to help us find a cure for this terrible disease we live with each day. The don’t want to admit they have been wrong for all these years. Too much money to be lost if they lose their chronic MS cash cow patients. So sad…..

March 5, 2012 at 12:46 am
(43) Linda Rousay says:

I fired my neurologist before I had angioplasty for CCSVI. When he was made aware of it, he was not happy about it. The last time he saw me I was in a power chair and AFO’s that he had to write a referral for two years earlier. My EDSS was 8.0 at the time of my procedure almost two years ago. We saw each other about five months after my procedure when I was walking unaided into the clinic with a friend. I think he might well be still in shock.

My Primary Care Physician is nothing short of amazed and spent the first year waiting for the “placebo effect” to wear off. I do have a neurologist who is part of the team that performed my procedures. He is very happy for my recovery. I am nearly asymptomatic for MS. Heat intolerance is the only symptom without relief.

I have talked about CCSVI with a handful of neurologists since my procedure and I have gotten mixed reviews. However, they have seen my MRI’s pre and post procedure as well as my 18 years of medical records since I was diagnosed with MS. I was not summarily dismissed at my last encounter.

March 6, 2012 at 12:43 pm
(44) Frank D. says:

When I asked my Neuro about CCSVI he said that there is no link to MS. When I told him I had the procedure his face had a blank look and he said do you know how many people died from the procedure, my response was less than the people who die from the medications. He had no response. Then I asked him if he had 95% or more restriction in his Jugular Veins what would he do, his response it is not FDA approved. I asked him to explain why after the procedure I now have a pulse in my feet and the numbness is gone, he replied it is a placebo effect. After being his patient for 14 years I did not expect him to be so against alternatives for his patients.

I forgot to mention when we were done speaking about CCSVI he tried to get me on a new drug (A few people have died on this new drug) he did fail to mention that and did not answer me when I brought it up. If you are wondering, I found a new Dr.

March 6, 2012 at 4:51 pm
(45) Shirley Renshaw says:

Why would I ask a neuro? This is a vascular issue. What has this got to do with MS? It may relieve symptoms of MS … which is great but to ask a neuro about CCSVI is like asking my car mechanic to remove my aching tooth. Which probably only needs a new filling.

Why would I get involved with a neuro to do a vascular study? No wonder they say do not do it, it’s dangerous … of course it’s dangerous … they have no clue and that makes sense.

They still have to figure out what causes MS and still have prove their auto immune theory. They have enough to do … let alone deal with vascular issues.

March 6, 2012 at 5:59 pm
(46) Dean says:

My Neuro told me that if she had MS that she would spend the $ on stem cell therapy. Caught me by total surprise.

March 6, 2012 at 6:29 pm
(47) Kellye C says:

Julie,
May I make a request of you?? What do you think needs to be done to get CCSVI accepted by the neuro’s? I know you did some blogging for the NMSS so why not ask them why they are fighting it so hard and not doing what is needed to get approved. As for my neuro?? Did not even bring it up since I had heard my neuro said anyone who believes in CCSVI is an idiot so I did not want to be called an idiot

March 6, 2012 at 6:31 pm
(48) Jason says:

Told my neurologist I went for it and he said I wasted my money and that I am getting worse. Everyone else says I have improved including fellow board members of the MS Society of Canada Alberta Division.
He forced a presciption on me for an experimental drug called 4AP that I was the one that told him about before I went for my CCSVI treatment.
I no longer reccomend him for anything including changing your tire as he would need a study first.

March 6, 2012 at 6:48 pm
(49) Anna says:

If by ‘doctor’ you mean my MS neurologist, it wasn’t positive.

I was told it was just anecdotal evidence and not scientific.

I did not ask for his help to find a place to get treated. He was not in that ‘business’ and I knew they wouldn’t help. I did it all on my own.

After I was treated and got better, he proceded to tell me that it has helped none of his patients and that I was actually worse and that only chemotherapy could help me now. I am not bed ridden nor and I wheelchair confined so you do the math. Not only was he not interested in my improvements, he didn’t even record them in my medical file.

I left his practice.

My GP on the other hand was always supportive in every way.

March 6, 2012 at 7:11 pm
(50) Kathleen says:

Although my first procedure left me undertreated and unaffected, when I told my primary doctor I was planning on having another procedure, he said with a smirk on his face, “It’s all anecdotal.” My neurologist said if I had any change, it would be due to the “Ampyra” I am taking. Medicaid won’t pay for another procedure saying, “It’s too controversial.” So, because my procedure was one of the first in 2010, I have to pay for another procedure from someone who will do it right!

March 6, 2012 at 7:39 pm
(51) Elizabeth says:

Hi told me, I never see in my other pacients that did it no miracle,and I answer, Well you are goin too see it in me because I belive in God’s work. and Hi answer: well its your money so do wath you tink is better for you ,

March 6, 2012 at 8:48 pm
(52) Chrystal2012 says:

I raised the subject to my *former* neurologist only out of curiosity. He responded while awkwardly looking at the floor rather than at me, saying he didn’t think anything would come of this (the vascular connection). He also said that he had just returned from a conference in Rome where no one had even mentioned CCSVI, and so he believed that “even they have realized there’s nothing to this.”

Shortly after this appointment, Dr. Zamboni himself was in Toronto presenting at the AAN conference!

For years, my neurologists have passed guesses off as medical facts. I had long learned to take their opinions, advice and prognosis with a grain of salt. My first neurologist adamantly insisted that MS didn’t cause pain, even as I cried because of pain I was experiencing in my back and eyes. He laughed when I asked if MS could have first reared its ugly head in the form of depression long before the onset of any physical symptoms, and subsequent diagnosis. Rather than saying he didn’t know, he passed off his guesses as facts, and had no qualms about ridiculing a patient.

Even after switching from one neurologist to another, there were many years between appointments in my 16+ years of MS, because – quite frankly – I can touch cotton balls to my own toes, prick myself with a pin, have myself do the toe-heel walk back and forth, etc., etc., as well as they ever did. And I never deliver a wanton dire prognosis in a bid to scare myself on to a drug treatment that has helped some mice with their induced MS-like condition.

I have no intention of ever seeing a neurologist again. Many fellow MSers have also walked away from the arrogant neurological community having suffered the same callous and insufficient care. The neurologists have displayed the same arrogance towards CCSVI and Dr. Zamboni, with their name-calling and immediate dismissal, and it has cost them even the last shred of respect that once was theirs…at least in this MS-Sufferer’s eyes.

March 6, 2012 at 9:10 pm
(53) Heather Stevenson says:

My neurologist and also the neurologist at the MS Clinic downtown were both negative when I spoke about CCSVI. My own neurologist would not even send me for an MRV to see if my veins were open or closed. She prefers the standard treatments even if they don’t help very much.

I had my procedure in the US because it wasn’t available to MS patients in Canada. It worked and I did well for about 6 months then I had a relapse in December. I have had no follow up since I returned home from having the procedure.

Doctors were not helpful at all in helping me find where I should go to have the procedure done. Facebook was my only resource and other MS patients there were very helpful.

March 7, 2012 at 12:52 am
(54) Tim says:

I have not been diagnosed with MS but because of the symptoms that I have had for years and after losing my wife to MS, who also never had an absolute positive diagnosis of MS for years of having it, I had an MRV done and I do have CCSVI. My neuro would not even look at the MRV scan disk that I had but he did keep a copy of the written results. He asked me why I had it done and was almost ready to shove me out the door.
I do not think that he would be open to having the angio done but at some point I do expect that I will have it done once I get some other problems under control.

March 7, 2012 at 8:33 am
(55) Teresa says:

When I questioned my neuro it was via e mail, his response was “I and the other super specialist think it is a complete waste of time and money” Upon showing him my doppler results he said “your veins are the same as everyone elses”! It has taken over a year to get an appointment with him when usually a request gets a quick response! I see him in a couple of weeks I want him to see me standing on one leg! :o )

March 7, 2012 at 12:04 pm
(56) Bobbo says:

My GP signed the form so that I could get tested for CCSVI in Vancouver (I live in Ontario). Prior to this, my neurologist said that CCSVI hasn’t been proven, period.I subsequently made the arrangements myself to have the procedure done in Providence, Rhode Island. When I returned, I made appointments with my GP (happy I had it done but still a non-believer), my neuro psychiastrist ( intersted, but surprised that I was no longer taking any of the meds that had prescribed) and my neurologist (surprised I had it done; not very interested). I am going to see my neuro on Friday and will still be doing better than when I first met him.

March 7, 2012 at 12:15 pm
(57) richard says:

my question is this – i have transverse myelitis – and a very narrowed left jugular from the heart to the brain – would this procedure help me???

March 7, 2012 at 12:50 pm
(58) Curt Juncker says:

My neuro showed me a clinical study that showed some with MS also have CCVSI (forget the percentages) but that the study found no evidence that those with CCVSI will get MS, i.e., evidence that CCVSI causes MS or that treating CCVSI will help with eliminating MS symptoms and/or prevent further demyelination or help with remyelination of the spinal cord.

March 7, 2012 at 1:04 pm
(59) marsha recknagel says:

Where to start? With the good news or with my frustration and anger with my neurologist–who is now retired–and with my PA–who speaks as if she is reading from a pamphlet? The good news is that I had venoplasty in Providence, RI done by a highly respected doctor who was running a clinical trial on CCSVI, which I didn’t qualify for since I live more than 200 miles from Providence. He performed it–my insurance paid–both my jugular veins were pancaked and one so torqued with a bulging “waist” that he didn’t balloon it. I did not expect it to work. I did not expect even to have constricted veins. I did not expect miracles. Within an hour after the ballooning of my jugular– in three places –I could see better. In two days I could walk an hour when before my leg gave out within ten minutes. I began to have vivid dreams. My calves and thighs and stomach had been numb. I could feel my legs. I had been so plagued with spatsic and restless legs that I thought I’d go mad and couldn’t envision many more years of that agony. My legs felt warm and calm at night. I got off neurontin, cutting my meds more than in half.

March 7, 2012 at 1:05 pm
(60) marsha recknagel says:

Now I can/could walk in a straight line without bumpiing into the walls. It was so obvious that my gp noticed immediately, and he couldn’t believe my Houston neurologist was not even CURIOUS. When I asked my neurologist what he thought of CCSVI he said, “Not much.” Even though I was living proof. I felt completely disrespected. I got off Copaxone, which I’d had a flair when on–and have not had any new lesions over the year off of Copaxone and my old lesions are inactive and somewhat smaller, according to my latest MRI. So what does the PA suggest: Copaxone. Or infusion! She prescribed Xanax and anti-depressants–even though I told her I was not depressed–and my friend who is a psychologist was with me and told her that she’d known me since seventh grade and that I was not depressed. Her idea that I was depressed came from the fact that I had a terrific headache, which I believe was caused by the MRI dye–which she totally dismissed and continued to speak to me in a patronizing manner with a lecture on depression l0l. I have had psychoanalytic training, have a Ph.D, teach at Rice University and have a memoir published. She spoke to me as if I were in the seventh grade–telling me the reason I was not feeling interested in things I use to be interested in was because I was depressed. I felt as if I were in Twilight Zone. I “inherited” this young woman when my neurologist retired.

March 7, 2012 at 1:33 pm
(61) Ann RP says:

I underwent the CCSVI procedure about a year ago in April. Because my jugglers were 90-95 % closed, the Doc put in two stents. So I have to live with those. I’m on Plavix now. With all that, absolutely nothing happened. That may be because I’ve had MS for about 35 years and am increasingly disabled. I went ahead and had the procedure done without my neuros permission or knowledge. I knew he would nay-say it. When I told him I’d had it done, he said nothing. To me it was a waste and it meant that I have potentially dangerous stents in my neck. I wouldn’t recommend it unless your doctor can find a very good practitioner and knows what to look for.

March 7, 2012 at 2:59 pm
(62) deb mareska says:

When I ask about it ,I was quickly told it was a bunch of crap. end of story.

March 7, 2012 at 7:59 pm
(63) Truus says:

Dear Julie i have seen only once a Neurologist to hear my dead sentence after i was diagnosed with secondary progressive MS in 2008, she could only offer drugs so i never went back to see a Neurologist, she told me the first time if i would not take drugs i would be helpless in bed in a short time,and yes i was very sick at that stage, but deep inside my heart i knew drugs was not a solution, i am 63 live in Austalia was born in Holland, when i read that Julie went to Amsterdam to conference CCSVI i got very excited, , i looked up Dr Paulo Zambodi and knew instantly he was right, and had 3 months later my CCSVI treatment this was in Dec 2011, my specialist said my jugular vein on the right hand side was blocked and i simply said please open it up he did! and it has turned my life around, i have improved 80% i could make my story very very long but my only advice is just have you jugular veins checked out exactly like Dr Zambodi says, have it treated if needed, and see what happens, everybody has the right to have this checked, and ofcourse Neurologist don`t want to hear about this, because if it works for others like it did for me they would have not much work left! they do not want to give their MS people away to radiologists, like they had to give many years ago diabetic patients to endocrinologist, they talk about the danger to have CCSVI treatment done, but they also should talk about the danger about MS drugs, some patients died from CCSVI treatment but they should also mention that people died from drugs, i just feel very sad i had to suffer for so so many years, i was diagnosed 4 years ago but i have suffered for 30 years and i always knew and said something in my neck is not right i had every single symptom MS people get my list would go to 50 different symptoms, but now i have only problems if the weather is hot, i keep cool and i am fine, i work from 7 am till 7 pm and my brain is very clear,

March 8, 2012 at 5:07 am
(64) CCSVIindia says:

In India, neurologists are completely dismissive of CCSVI – they say that benefits are anecdotal and all studies are not able to prove association. This is experimental procedure, expensive and can harm patients.

MS CCSVI social group has to become more active and vocal for scientific community to reach to the bottom of it and have some level of consensus.

Otherwise, patients will continue to be consfused, suffer and lose time, from where recovery will become even more difficult.

March 8, 2012 at 2:23 pm
(65) Colleen says:

I live in Houston. This time last year I read that a Dr. here in town was starting a study of CCSVI procedures. I mulled it over and then called for an appt. I was scheduled for an appt. in the summer (apparently he was getting a lot of calls!). I specifically asked if I needed a referral or anything from my Dr. and was told no.

So the DAY BEFORE my long-awaited appt. his office calls me to tell me I can’t just come in, that I need a referral from my neuro. (I read into that that he was getting flack from neuros about their pts going behind their backs).

I was soooo annoyed. The afternoon before my morning appt. There was no way I could get anything from my own neuro in time for the appt. So unfortunately I blew it off.

I am scheduled to see neuro in the next month or two as a followup to starting on Gilyena. I plan to ask her thoughts on CCSVI.

March 8, 2012 at 4:06 pm
(66) B. Flankey says:

I have read comments on the CCSVI proceedure and it is a proceedure I would like to try-if its a placebo effect I still go for it as I truly believe the mind believing is the real cure, At this time my Neurokogist -whom I like very much said at my next appointment he will discuss it with me but at this time he does not recommend to his patients to have the proceedure of CCSVI. I shall ask my family physician for a recommendation to a DR. to check that I do or don’t have blockage in my veins and see what happens.. I do not know how else to have this ball rolling -so to speak. I do have SPMS and if I can do siomething to halt this-I will.

March 16, 2012 at 4:21 pm
(67) Alexandra Scott says:

I have had M.S, since I was 16 years old. I live in Italia now and have for 16 years because I have free health care. last year I heard about the new treatment CCSVI and the Italian doctor that figured it out.
I then went to the head doctor in my local hospital and mentioned it.
WOW did she react negatively! Like Ohhh hold on here this is a new idea and needs alot of work and I don’t want to discuss it. .
Then I searched around and found out that I actually couldn’t get even the first visit to help me figure this out as the entire medical world here in ROME had blocked anything being done towards CCSVI
UNTIL more time and tests etc, were done/
So I would have to fly to Edinbourgh or to Stanford if I wanted it done.

I am actually furious now and try to just stay peaceful and wait till this all pans out,,but,,this sucks. We the MS people should be screaming!!
Thank you for asking and talking about this Julie!! Alexandra

March 18, 2012 at 10:01 pm
(68) Mike Clark says:

I take my wife to Johns Hopkins yearly for an annual checkup for her MS. Hopkins is an absolutely wonderful place. Last year I asked our Doctor about this procedure and he gave one answer “bogus.” Enough said. We continue to track the research closely and will find a treatment that is the real thing.

March 23, 2012 at 4:34 pm
(69) klinceza says:

Hi,
I have 42 years and MS 8 years. Since the treatment I received all these years, corticosteroids, interferon, Mitoxantron course with all the possible vitamins and healthy food. Dilatation of the jugular veins and the azygos vein I did 2010 years and 2011. There is a strong likelihood that the re-restenosis occurred in this year and I will do joint. I believe that the cause of MS is a problem with the veins and I am convinced se.Moj gait was holding, the balance was very bad and I had a spasm in his right leg. After the first joint I could walk independently and had spasms that plagued me the most, the balance was so good that I could stand on one leg. First, the deterioration occurred after 3 months with a return of symptoms, and gradually a strong spasm in the leg. Another expansion was after 11 months and still have symptoms improve but unfortunately already back in 2 months. Now I have a very strong spasms in my right leg and occasionally in the left. The balance is bad, increased sensitivity to both legs, fatigue is present.
I am sure that CCSVI solution for us to just be in time to discover a problem with the vein to prevent big damage.
I’ll do it again dilating and I hope that my doctor will put the stents because my veins were closed over 80 percent at last finding the other joints.
Believe in CCSVI neurologists and just say that this is NOTHING!

March 29, 2012 at 10:44 am
(70) dar says:

To the person who said Medicare does not cover CCSVI. My doctor takes Medicare and it’s covered. My twin is having the procedure soon and has Mediare. The doctor doesn’t call it CCSVI and doesn’t connect it to MS.

April 25, 2012 at 12:00 pm
(71) James says:

I have had the procedure, but docs cannot typically support the treatment until recognized by the medical society…..

I had the procedure done on the 18th of April and have had good changes so far. The most important is my ability to sleep. I have been able to go to bed and not wake up till morning. This has helped my energy the next day and my ability to function.

May 23, 2012 at 8:53 pm
(72) Tracy says:

I am going for treatment in June 2012 I asked Neuro about this in 08 he said wait and see not enough evidence in 2012 he is still saying that …..so much time wasted people with MS dont have the luxury of time and this is safer in my opinion than Coronary Angioplasty done everyday in our hospitals (I am a nurse with 20 years ICU experience) and we with MS can no longer have this done in a public hospital or have it covered by health insurance we have to have it done in a private hospital and pay for it talk about discrimination!!!!!!!!!!

August 21, 2012 at 9:20 pm
(73) Angela says:

How Does My Neurologist Talk About CCSVI?
…..well when I asked him he said “CCSVI and Liberation Therapy is all a cash grab?
How’s that for a nice positive response???

December 3, 2012 at 7:24 am
(74) Jarrod Robinson says:

Like many others my neurologist is insistent that MS is an autoimmune disease , not a disorder and he can’t see past the blinkers his education has created. I have been treated for CCSVI with huge success and although my symptoms are returning I know exactly why. My neurologist has not seen me since I was treated he hides behind my MS nurse.

June 9, 2013 at 8:20 pm
(75) Cayce says:

My cousin might get The Liberation Treatment/Angioplasty Stem Cell Therapy even though her doctor said no. The only reason that MS doctors have said no to The Liberation Treatment/Angioplasty Stem Cell Therapy is because all those quacks care about is money not what’s best for their patients. Don’t have it done with stents. The stents will get you in trouble. Stents have come loose. The balloon tipped catheters are much safer. To prevent your MS from coming back take a Vitamin D Supplement every day. Recent studies have shown that Vitamin D lowers your risk of getting MS. To avoid blood clots and strokes ask your CCSVI Doctor to give you a prescription for Blood Clot shots. Once you’ve completed your shots or had to stop them due to an allergic reaction take a Beyer Aspirin every day to avoid getting a stroke. If you have to stop the shots prop your feet up on a pillow. The elevation will help you avoid blood clots. Make your that your pillow is allergy free.

December 29, 2013 at 5:49 pm
(76) Nancy says:

I had the procedure in Mexico. I told my doctor that I felt worse before and better after, then gave measurable examples of improvement (temperatures in various limbs, etc). I then asked what he thought about it, and he said “Well, initially I thought it was nuts, but you didn’t provide anecdotal evidence. You produced measurable evidence…. I might have to change my opinion! I will look into it further, and now I know for what I should be looking….”

All in all – it was good. He didn’t know anything about it, but was willing to accept that it did *something* (which is better than the *nothing* that the media likes to report)

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