I have been wanting to write about this topic for awhile, ever since I heard the experience described by one person on a radio show. This woman described how she saved her money and got treated for chronic cerebrospinal venous insufficiency (CCSVI), using a balloon venoplasty procedure that is often referred to as "Liberation treatment." She spoke of feeling clearheaded, having energy, feeling like she got a second chance after MS had stolen so very much from her.
Then, one by one, her symptoms began returning. She began limping again. She lost much of the coordination that she had gained. Once again, she was tired.
She was also sad. She had experienced what her life would have been like without MS, now it was back.
This article that I read today echoed many of the feelings that are experienced by people undergoing treatment for CCSVI and some of the reasons behind restenosis (when the vein closes up again). We are learning from the experiences of many people over the past year and a half that this is very common. Although some clinics use stents to keep the veins open, others are reluctant to place a stent in a vein, as they are designed for arteries and could become dislodged and travel to the heart.
I find it striking that, while both the woman in the radio show and the woman in the newspaper article are undeniably sad about the return of MS symptoms, they are also hopeful. Both of them said that they will have the surgery repeated once a proper stent is developed, which will greatly improve the chances of keeping the veins open.
I have not been treated for CCSVI, but I have had brief glimpses into what a symptom-free life would be like (occasionally on LDN I felt this way, and when following a strict diet in cool weather I felt this way sometimes). Now it is hot where I am and I once again have the entire weight of my MS pressing down on me. I cannot imagine how it would feel to think I was "cured" for weeks or months, just to wake up to familiar pains and tingles that got progressively worse. Would I be encouraged by the window into feeling great or devastated by the return of MS symptoms? Probably both.
What about you? Have you been treated for CCSVI? What were your results? Did your symptoms return? What will you do now? Please share with us in the comment section below.
Read more about CCSVI:
I had CCSVI 7 months ago. I was bed-ridden, fatigue was my worst symptom. 3 days after the procedure I was up and bouncing around the house. My life is now totally normal and there are no signs of fatigue or pins & needs returning. The procedure for me was extremely painful. It was one hour of pure hell and I cried the whole way through it. However, I hear this is unusual. Apparently the doctor burst a blood vessell.?? Anyway, I would ask/beg to be knocked out next time!
This article brings up some excellent points – thank you. Having had 3 procedures myself (March 2010, July 2010 & Jan 2011) I understand the potential for a rollercoaster experience. I think that, given this is all in such early stages, that we realise that the optimum techniques and follow up has not yet been established. Therefore there is an experimental nature to what we have been doing – and this must be understood.
For me, when I restenosed after my first procedure I was well aware of this possibility, that the nature of veins is that often 2-3 angioplasties are required or perhaps on a long term basis. It helped to understand this when a routine check up showed restenosis. Whilst my symptoms had not returned full blast I had felt fatigue return and my feet go cold again. So when a second procedure restored my feet and I felt energy again – I was encouraged.
Cost – this is big problem – if you can only afford one treatment then you will need to understand this reality even more. For me, being part of a pre-trial in Australia, I don’t have to pay for follow up, this makes accepting the risk of restenosis rather easy to handle.
The way I see it, this is likely going to be a life long management of a venous condition for me (whether it is proven to be related to MS or not) which will involve screening and treatments as required. Not unlike how I have been managing my MS to date. I think if we can understand this, that the ups and downs are possible and that it is not a one stop fix then perhaps it will go some way to bring some balance to the hopes and fears.
Again, I think if barriers to access were removed (cost and availability) then many of the current stresses would be alleviated. People will then just be able to decide for themselves how often they are comfortable in being treated based on the benefits they receive vs the risk (as we now decide which risk/benefits of MS drugs we are comfortable with).
I just had my second angioplasty two weeks ago today, the first was Oct 2010…I restenosed shortly after the first but not before I got warm, pink feet, got my sense of smell and taste back, and wonderful balance. I now have warm, pink feet again, and the awful headache I was having everyday is gone. I am expecting my balance to return next week as that’s what happened last time, and Io never lost the good sense of smell and taste..
I can tell the IR was more aggresive and he used larger balloons this time, so I am hoping it last longer and I see more positive results.
I didn’t lose hope when I restenosed because I knew there was something out there that could help me have a better quality of life with this disease…something that except for LDN has never been available to me.
It’s a real shame that my Neurologist was against LDN, and thinks CCSVI is a scam..the only two things that have actually helped me, and beleieve me I took a LOT of meds that he prescribed…and it’s shame that people with MS that don’t do well with stress have to fight to resource both of these.
Cost is a problem because I cannot afford to do this every six months…I am hoping stents will be used more in the future with good results…I would be willing to have stents.
I was treated for CCSVI 16/6/2010, angioed Right Jugular but I went for a check up 24/11/2010 and had restenosed 30% so I had this redone and my left Jugular done also. I am now due back in the next couple of months to have a check up to see if either have restenosed again. The cost is a bit of a problem but I will find the money if I have to be retreated again. My life has changed so much since my first treatment but I do fear for the restenosis again.
I am at present good but there are a few things MS is returning to my body, my feet are not as warm as they were but I pray that this is not as a cause of restenosis.
I live in the UK I travel to Poland for my checks they are truely wonderful but unfortunatley the cost now is starting to become a problem.
I agree these barriers need to be removed so that we can all benefit from this treatment in our own countries.
I will never regreat having this done as it has given me a pain free quality of lie but do fear the pain returning every day.
I had the CCSVI treatment in July of 2010 in San Diego. Immediately afterwords I clearly had improvements:
-The vertigo I constantly felt was gone.
-I had no heat intolerance (sat outside in 90 degree weather for hours with no issue)
-Balance was only slightly better.
-I didn’t have any headaches, which I experienced daily before.
-My fatigue was MUCH better. Didn’t have to lay down for a nap during the day and wake up full of energy.
-I had severe leg stiffness in the morning or after sitting for an extended period of time. It was gone the morning after.
-My hands and feet were no longer blue and cold.
-I had minor swallowing issue prior to the treatment, which went away immediately after.
-Neck pain was gone.
The benefits lasted until November, then a few things went back to pre angio and I had an exacerbation that effected my left arm.
In December I went back in for my second angio and my right jugular was so blocked they couldn’t open it. My take away is there IS something to CCSVI. I didn’t get stents and I won’t until they are tested. I beieve this is another piece of the MS puzzle and it deserves attention.
I was treated June 7th of 2010 the first time and saw immediate benefits. And yes huge rollercoaster of emotions esp the first time… The second time was on the 9th of this month. So far I have found 1 for sure benefit and one waxing and waning benefit as I have a bothersome UTI right now and did when treated so it may be making it so symptoms act up more… Anyhow it is amazing to taste if you will the flavours that have been absent for so long. Even if they aren’t perfect and even if there are some missing from what you recall. It does cause reason for hope. ALso it causes reason to be scared to lose things again. SO the first time I was a reck! I’d heard sleeping a certain way helped keep things flowing properly so then anytime I fell asleep a different way or woke up a different way I was scared I was boogering my veins back up… Well now going and coming back from my second I am far calmer. I’ve been there, done that so to speak and so I feel like I truly know the ropes. Emotionally I am far more level and able to deal with the comings and goings without flipping out. I know more likely than not I will yet again stenose. BUT THE TREATMENT, THE FEELINGS RETURNED TO CLOSER TO NORMALCY THE BETTER QUALITY OF LIFE – PRICELESS!
I was treated 8/20/10 in Cabo and had amazing results. For me the cognitive clarity was amazing. I also know that my main issue were the valves and I think now with the cutting balloons when I go back it will be lasting. There are still many amazing things that I have now that I did not have before. Tysarbi was poison to me and really caused massive cog-fog and I felt as if that was flushed from my brain. I am having cognitive issues but not the spacy fog it is actually sharp as I am aware of the cognitive issues. I also feel they are making leaps and bounds on this and perfecting the techniques
My procedure was a year ago. Like some of the others, I had fafatigue, weakness, and cognitive issues. Had they been improved alone, I would have considered my experience successful . Unlike the others, I have not restenosed or had anysymptom reoccurrence. I did have stents, but not the metal arterial ones commonly referred to. Another difference from many is that my disability was quite severe. I was basically in a wheelchair and needed daily assistance. Something I no linger have to deal with anymore. I suppose that restenosis would be possible in my case as well, but so far there are no signs of it. I believe there is much more to recovery than the procedure for CCSVI alone.
What type of stent did you get, Linda?
Dont stress about stents! Dr’s are finding that by using larger balloons to open the veins and by disrupting the valves, the need for stents is no longer as great as it was when they first started doing the venoplasty.
hi Ginger, hope you doing fine, where did you hear about this larger balloons, is the a web site ! ! !
I am from Syria ,RRMS,20years old and dx2007. I have done the liberation treatment 14 months ago by Mamoon Al-Omari for LJV 95% ,RJV 75%, at the beginning the improvements were amazing my balance had become so much better,I had no more urinate problems and the biggest improvement was about my left leg witch was a little heavy after 8 months I made a dobler test by Dr Mamoon and my left jugular vein restenosed for about 70% and after 5 months I made a venoghram catheter by another Radiologist to reopen LJV but the doctor have not found my LJV he have found many bypasses draining blood normally so I don’t now where the LJV has gone.
@ Ramy : You said : “but the doctor have not found my LJV he have found many bypasses draining blood normally so I don’t now where the LJV has gone.”
You would need and would have needed a 3D MRI to see what the heck is or was going on pre and post procedure. This is where the Haacke CCSVI/ MRI protocol is so important. Here again, a good example of this. I am looking forward to the day where all the IRs treating will understand the importance of the Haacke protocol !!!!
Mylène Therrien, Québec city.
I got great improvements with my first procedure. they only lasted a week. Had second, I now had clots in the 1 stent and the other 2 veins were now closed 98% (worse than before). Got minimal improvements but the disappeared too. Tried 3 more times but the veins are 100% occluded and the doctors were unable to do anything. Veins are blocked with scarring. The last doctor said my only option is a vein bypass.
@ Jan
I found your testimony very honest and courageous. You are somebody I admire for stepping out of the dark and tell your story. Here , where I live in the province of Québec, the Collège of Physicians are relunctant to offer a Duplex examination or a MRI examination in fear of people rushing to get a second ,third or more venous angioplasties abroad each time they restenose. This would eventually result in a situation like the one Jan experienced.
I will not debate follow-up care here even if I find some flaws in the CMQ arguments. In fact, I am a bit surprised that they do not recommend routine follow up of the vessel post angioplasty. Routine follow up is done on vessels that doctors treat with angioplasty when done in other parts of the body. I still think that people have a good reason to have follow up duplex evaluation-this study helps detect problems as they develop and allows intervention when required. “Required” doesn’t mean every 3 months though. Make sure the IR you choose will provide the standard care treatment used in similar situation and not someone that is overly agressive in order to get better short term results. Cheers.
I live in St Lazare, Quebec.
I was treated 2 June 2010 with amazing results. Better everything even before I was allowed to stand up after 3 hours’ recovery. I know that it was before three weeks had passed that I started to notice little problems but I dismissed them. Then after 3 weeks I was thrust into the role of primary caregiver for my mother who had a stroke. The symptoms increased over time while I cared for her, and people told me it was the stress of my new role. I believed them then, but I don’t now, almost a year later. Mom has moved into a residence, I’m alone, and the symptoms keep increasing. I too believe in this procedure, and am scheduled for my second treatment at the end of this month.
I agree with kezzcass when she says, “… if barriers to access were removed (cost and availability) then many of the current stresses would be alleviated. People will then just be able to decide for themselves how often they are comfortable in being treated based on the benefits they receive vs the risk (as we now decide which risk/benefits of MS drugs we are comfortable with).”
We should be allowed this treatment and the subsequent follow up in the same way it would be for ANY other condition with which we are faced. MS should not prevent us from being treated fairly. There is no reason but discrimination in Canada, that disallows us from having a chance at being healthy.
It has been 4 1/2 months since I was liberated. I needed 3 stents to keep my left jugular open but it thrombosed and is occluded. The procedure was painful and long. They could not treat my azygous this time. All of my “MS” symptoms are gone. I am on Coumadin until July. I told my cardiologist about my fears of restenosis. He told me that I should live for today. He sees a lot of patients with cardiovascular disease who need additional angioplasties. That procedure has become so commonplace. CCSVI is new and is an emerging science. Dr. Siskin elected to “leave well-enough alone” until my symptoms return and they can evaluate the azygous. Hopefully, in the near future they will have improved stents, valve treatment, and a protocol for aftercare to prevent venous restenosis.
I too devloped clots in my stent. I fortunately returned to the doctor and had it done again 3 weeks after the first time. I knew something was wrong. As I came back in time the doctor was able to remove the clot.
My wife had the CCSVI venoplasty procedure done 7 months ago. We saw immediate and dramatic improvements in her RRMS symptoms and have noted other improvements since. Almost all of her symptoms have disappeared.
I was treated 8 months ago in Cabo San Lucas with 70% and 75% blockages in my jugular veins. It was my valves that were causing the blockages. No longer on Rebif since then either, after 9 years of injections. I feel sooooooo much better.
I had the procedure in Oct. 2010 and again April 2011. I had restenosised. I will be checked again in Oct. 2011. My MS symptoms are improved. I didn’t have the AHA moment that you read about, but over a short period of time my family saw the improvements. Better walking, speaking, cognitive and fatigue. For lots of important information, go to Hubbard Foundation’s website and watch the videos from their first CCSVI Conference on May 14th. http://www.youtube.com/user/HubbFound?blend=7&ob=5#p/u/5/wbFU5w8KbQc
I am 43 and have RRMS. I was liberated on Nov 8,2010 and was feeling fantastic. I am going to get my second treatment next month. All my symtoms went away for 5 months, but are now returning. They have been coming back slowly. Not in a day or two, but just slowly getting worse. I am not scared to get a stent if that is what it takes. Tell someone that has been on dialysis and needed one to live. I wonder when the CRAB drug companies will be rolling out some new type of stents?….LOL.
Dec. 2, 2010 was my date for this procedure. I never had any huge improvement with any of my MS symptoms except that my earrings were much easier to do and still are…wierd, eh?
I had the first doppler of the neck in March 2011 and all is good. My instructions were to have follow-up dopplers 3, 6, 9, 18 months post procedure. Don’t understand a painful “liberation” and not being sedated.
Yes, it didn’t do much for me but hey, I knew it going into it that for some it won’t work. If need be I’d have it done again. Never know when something might work & I’ll do anything to get rid of this bloody disease.
i was treated aug. 3,2010 in albany by dr. englander. had no improvements. woke up with a novicane numb leg. i had never experienced numbness. got no explanation why and it still persist. i am worsening at a faster speed. my ultrasound follow ups say i have flow. i am due to have one soon and am holding my breath. i am watching the progress and hope they soon can help us all. the clotting and scarring that is happening is scarey to me-but so are the symptoms they call ms. so???? i am ppms no brain lesions. i have 1 lesion on my cervical spine.and my thoughts are the spinal veins are more involved and at this point i don’t think they can be treated. i’m in a wheelchair and pretty bad so time is my enemy.
My son was treated with venous angioplasty on May,6,2010. His symptoms resolved and have not returned. He had the full Haacke protocol prior to venoplasty which showed jugular and azygos stenosis. As we run an fMRI facility we have been able to test him on a regular basis. His most recent test showed more patent blood vessels, better flow and loss of a collateral(meaning the jugulars are doing their job). He has been on a gluten/dairy free diet which helps to keep his enodothelium healthy.
Factors which can increase the odds of developing vein disease:
Age – Varicose Veins commonly begins at the ages 30 -70 and get progressively worse.
Sex- The phenomenon is more common with women, since they undergo multiple hormonal changes during pregnancy or menopause. The female hormones tend to damage vein walls. Taking birth control pills or additional female hormones may also assist in varicose veins development.
Genetics – Varicose Veins are genetic, which means if other family members had varicose veins, there’s a greater chance you will too.
Obesity – Obesity causes a lot of pressure on our leg veins, which can damage the vein system.
Standing For Extensive Periods Of Time – Standing for a long time makes it difficult for the blood to flow back into the heart, which can worsen the condition of varicose veins.
Why doesn’t anyone see the connection?
Angioplasty treated my three severely narrowed veins and immediately afterwards I felt alive again. No more MS symptoms, a bounce in my step, a smile on my face and a warmth in my heart. The biggest surprise was that my personality returned along with my physical well-being.
Well, it’s been four months since my last treatment and the fatigue is returning…ever so slowly…but returning none the less. However, I am not sad; instead, I’m hopeful. I can tackle any crippling fatigue with further treatments. And just to be on the safe side, I am once again saving my money to pay for angioplasty that may be needed in the future.
For the past four months I have been normal and I feel as though I’ve been given another chance at life. So, I will seek further medical treatment when I get to a point where I can no longer physically cope with life. The cost of the treatment was/is worth every dollar!
Thanks Mylène for your note.I think Dr Haackes protocol for imaging veins is very important and could answer all of my questions but the problem that I am from Syria and the device that provides 3D MRI picture for my jugular veins is very expensive beside most of the doctors in Syria are stupid and have closed minds.I hope that someday I could travel to America to see Dr Haacke.
here is my email: ramysonmez90@yahoo.com I hope to keep in touch with you
Ramy Sonmez Aleppo_Syria
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
Hi I had CCSVI in Brooklyn 14 days ago.My urinary retention which sometime also went into reverse was immediately alleviated.My feet have been warm.A week later had a Tysabri infusion and was knocked out for about four days with the fatigue and my urinary symptoms came back slightly.3 days ago I started on Letrozole as an adjuvant therapy for breast cancer as I had a double radical mastectomy last November and finished radiation 48 days ago I have started walking the dog without my cane and thats something I havn’t done for months and the pain in my neck and spine has gone.I just start to feel good then another Tysabri infusion or another cancer drug is introduced so I am dealing with those sideaffects. .CCSVI has already alleviated some of the symptoms of MS that I experience and I am told it can improve as the blood gets flowing.I am on the Gawler Foundation diet for MS and Cancer and ie,no refined processed food,sugar,dairy all organic diet.
I just worry about the exposure to radiation from X-ray fluoroscopy that is on your body throughout the procedure. It’s not like getting a quick x-ray. The dose is much greater. Then if you’ve had this procedure multiple times it adds up. I wonder if 20-30 years from now they will look at these people to determine if it raised their radiation risk.
I had great relief from my MS symptoms when I replaced my amalgam fillings. In fact I have not had a relapse for years now. Thank God. This new Liberation therapy makes sense why mercury in fillings affects some people and others go free. There are risks with any medical procedure. Stents in arteries fail as well. Angioplasty is usually a temporary fix that needs repeating.
The lack of support for MS patients is appaling. Anyone else would be checked for blocked veins and they would be corrected. It is not a new procedure, only for treatment of MS. We should at least have the right to know if we have a blockage in our veins, and then decide if we want them treated. Or should we just wait to have a stroke?
I had the venoplasty Nov. 3, 2010; the results were dramatic. By February I knew that the vein was narrowing again. That month was one of despair–almost as painful emotionally as my diagnosis–five years ago (I’m 58). My primary symptoms are fatigue, right leg weakness and drop foot, and terrible RLS at night. To sleep I was on so much medication that I was falling apart. Sometimes 500 mg of neurontin a night and I’m quite sensitive to medication. I have only had three neurontin since my procedure. I’m having it done again on July 5th but my doctor was very reluctant to do it. Only because I said I would go to Europe or somewhere no matter what did he agree. He has a study in which 30 people with MS have had the treatment and only two of us have had dramatic improvement. He said this is the last time–that my vein can’t take another one–the right vein is too thin from CCSVI to balloon so I only have had the left vein ballooned in three places. I do believe dehydration is a huge factor. I am now ALL ABOUT WATER. I think many of us with MS start resisting drinking enough water because of the urinary problems. Now–I don’t care. I had my full life back. I want it back again. Perhaps that is greedy. I’m not sure.
Marsha,
It is not selfish to want to live your life pain-free and adding value to the lives of those you touch. These liberation stories bring tears to my eyes as patients tell their stories about how they regain the ability to “live” w/o the heinous symptoms that render us “helpless” through no fault of our own.
I feel our help to regain our lives back will be through CCVSI or remylenation of our nerves. But time is all of our enemy.
Here’s to all who suffer from this crappy disease. HELP cannot come a day too soon.
My best to all of you.
I had the CCSVI-treatment 1 yr. ago, and it helped me a lot, but unfortunately I ran into a Borrelia, witch put me back to almost scratch.
Also I felt most of my former MS-symptoms returned, with cognitive disabilities and numbness in the right side.
So I assume that I have restenosed almost back to former state 70 % in the right side, and 60 % in the left, and that my BBB stays open for any bacteria who want to enter into the world of me.
I have decided to take advantage of this, and have started EDTA-treatment (ethylen diamin tetra acetat) witch is a large molecule, binding metals like Ca and Fe.
My theory is to transport the Fe out of my brain, and afterwards the treatment, I hope to close the BBB, and then get the former efforts from a new CCSVI-procedure, back again.
Like in Canada, the neurologists in Denmark will not allow patient to be treated, so I’m in the same situation as women’s in catholic countries, wanting an abort.
One have to pay a lot of money for having some pleasure…
I had angioplasty almost one year ago, in Jan. 2011. I am 59 and have been going downhill for about 10 years. After the procedure, my feet were of equal temperature and my family said my face wasn’t so gray. I was very hopeful but nothing else happened for two weeks. Then I was able to walk about 30 feet without a cane or walker. I started using the elliptical and worked up to two sessions of 30 min. twice daily. I felt my life might be possible again. But within a month, I began to fade. I lost the little balance I had. After 9 months I started LDN. It helped to put some color back in my toes. However, I’ve lost anything I gained from the CCSVI procedure. I hesitate go back for two reasons: one is cost. We had to take it out of my husband’s retirement fund. I can’t work and get no govt/state disability. I hate to take more money from that fund he’s spent decades to build up…and I must add that my husband would withdraw the money in an instant to help me. But the treatment only lasted a month. And two: I hope the technology will improve or they develop vein stents. I”ve read how some of you have had stent problems and it scares me. I know that CCSVI is a big part of MS and I don’t know if the problems will be solved in time to help me. I’m both somewhat hopeful and also depressed that it didn’t last longer for me.
Katia, my first liberation was very painful. My second one was easy. I was able to joke with Dr. Scalafani during the procedure. Maybe if you need a follow-up procedure it will not be so bad.