- February 25th, 2011
How much does patient testimony matter? You decide.
(Editorial: each testimony is genuine, different formatting used for publishing purpose only)
Nov 22, 2010
I had angioplasty in Poland in June, and then again in the first week of October. Two days ago, I began to experience dull pain in my LIJV (where an 18 mm balloon was deployed). I also seem to be having an "MS" exacerbation. I was concerned about possible clotting, so I went to ER in Vancouver tonight. I had a full blood work-up, and an ultrasound of my LIJV. There was no evidence of clotting, and infection, dissection, etc. were also ruled out. No idea of the cause of the pain, but I was admonished to return immediately if there were any changes for the worse. So, at least at Mount St. Joseph's Hospital in Vancouver, you will not be turned away, and you can expect to be investigated promptly, completely, and with all due concern. I did inform them of my angioplasty for "MS"/CCSVI history.
(the exacerbation is definite, and nasty)
Nov 29, 2010
I didn't have the experience that it moved the first months, but now I seem to be regressing pretty fast, and one of the symptoms is pins and needles all over my body. This might be one reason why I feel this. Another thing that I feel is the inappropriate movements of the muscles surrounding the right jug in the neck. And the pain. I used to experience pain in one position, now in another.
Actually, I think that I am confused. A lot. And maybe mostly scared. With 1000 scenarios in my head. I think that I had a rough year concerning my CCSVI procedure and its effects. First two failure procedures, than the third one, from which I saw the effects 2 months later. Then relapse...
I think that I can't keep on switching my disposition from 'sick without cure' to 'sick with cure' back and forth all the time. It drains my strength.
Nov 30, 2010
Thanks for the advice, but I do not need it. I was and am fully aware that there are no guarantees with this procedure. I went in May knowing that it was not a cure, I hoped that my MS stablised and did not progress. I also hoped that I may experience some reduction in my daily symptoms.
When I had the procedure I was satisfied that I was doing all I could to help myself, that was a great feeling after years of frustration and feeling that I was on a slippery slope and there was nothing I could do about it.
If I look back at my journey since finding out about CCSVI I can say that I have been liberated quite a few times already...
Firstly for the first time since being diagnosed over 10 years ago I was given hope with regards to my MS. The hope spurred me on to read as much as I could and I made the informed decision to follow my gut feeling, it all made so much sense to me. (Liberation 1).
Secondly, Once I had decided that I wanted to follow this route I was on a high but was brought down to earth with a bang once I found out how much this was going to cost. I tried to find someone in the UK who was willing to perform the procedure and I was met with a dead end. I was totally deflated and the frustation was overwhelming. However, my lovely family stepped in and said that they would cover the cost if I was sure that this is what I wanted to do. (Liberation 2).
But don't forget there is big money tied up in CCSVI also. So many for-profit clinics are gathering in millions for doing a treatment and then sending people away to cope on their own. It's a huge money spinner for them and while you can fault big pharma (and I'll agree with you - especially Teva, who makes my Copaxone, who has been taken to court for price gouging, found guilty, agreed with the verdict and then kept the prices EXACTLY the same as they were), big surgery has its own blame to wear. There have been SO many tests and surgeries and procedures done of all sorts that were of no clinical benefit and caused harm that cost the healthcare systems and the poor patients
money and their lives. I'm not talking about CCSVI here, necessarily, so don't blast me, people, but I am talking about the surgery once used to redirect blood for stroke patients, about total mastectomies, about the test that show so many false positives that people go through unnecessary surgery to "treat" (mammograms being one, prostate testing another).
Big medicine has LOTS of interest in the CCSVI thing working, you bet. And they are every bit as grasping and venal as big pharma.
So I share your frustration in many directions. But I'm not willing to accept one money-sucker as inherently better than the other.
Thirdly, once I had made the decision and was given the financial resources to follow it, (something that I am well aware that other MSers do not have the privilege of, and that saddens me deeply), I made an appointment with my Neurologist to keep him informed.
Only to be told that I was making a big mistake, that he was against the idea, and basically that I should not go. After listening to his advice I informed him that it was my body and I was willing to take the risk. I thanked him for his concern and told him that I would keep him updated. That in itself was so liberating! For once I was able to make my own decision regarding my own health. (Liberation 3).
I went to Poland in May with a feeling of hope and dread. Hope that this could help me in some way and dread thinking that they may perform the tests and tell me that I did not have CCSVI, what then?? They did the test and confirmed that I did and that feeling of dread lifted, there was something they could do!! (Liberation 4).
The following day I had the procedure, I was nervous but excited at the same time. The sense of expectation was quite exhilarating, what did the future hold, this was something I had not felt for a long time with regards to the MS. I was not disappointed in the days/weeks that followed. I experienced a reduction in many of my everyday symptoms and had more energy than I knew what to do with. My balance was 90% better. My head was clearing, my tremour was less, my feet and hands were warm. This brought home to me just how much the MS was affecting me and I could feel improvements! (Liberation 5).
Slowly over the past 6 months or so I have been noticing that I am experiencing more fatigue and my head is not as clear as it was. This was something that I was aware could happen, but hoped that it would not. Although I did feel down about it for a short while, I was also aware that the same options were available to me. I made the follow up appointment and am going again on Wednesday. My family have come to the rescue again and are funding the second visit, for which I am truly thankful. Again I have hope and am excited about the future. (Liberation 6).
That said, I think that this may have to be my last trip as I cannot expect my family to keep putting their hands in their pockets. Hopefully, this trip will keep me going until the procedure is available here.
Although this is a long winded answer, I suppose I can sum up by saying that I am going for the second, fully aware that there are no guarantees and although I cannot afford a third or fourth I would have the procedure done every month if it was available, accessible
and near to home.
Unfortunately this is not the case yet. I say yet, because I truly believe and hope that there will come a day when this is available to all. I just hope that the experiences of those of us who were willing to take the risk in these early days will be of benefit to those who come after us.
As you can see, this has been a rollercoaster of a ride for me and those close to me so far. I do not know what is around the corner, I just hope that it is one of those steep inclines and not one of those stomach churning dips. We will see...
Nov 29, 2010
I have had PPMS for about 4/5 years (or since diagnosed anyway).
Anyway I had the "liberation treatment" in Poland recently and have just returned from a 2 month checkup. The 2 month reason was becuse I had 2 stents fitted in my left jugular and as it was the first time they had done it they wanted to check it was still ok. The improvements I was having after the procedure were amazing but they started to tail off so I was keen to see if there was a reason. There was....
The uppermost stent had closed, this was due to a "bulbous part" of my carotid artery pressing on the stent and deforming it to the extent it was closed. Just to add insult to injury, the vein in between had also re stenosed. They angioplastied the stent a number of times but the following day it had closed up again. The surgeon was most apologetic and said that until a new stent was designed then it was not possible to do anything further. He explained in great detail what had happened and that they had never come across it before, I believe him too. I came home with all the paperwork and dvd's and instructions to see my doc as soon as possible as I was on 3 months worth of fraxiparine plus other tablets to keep my blood thin so it wouldnt clot and could get through the gap that was left. Its sods law that I would be one of the minute percentage who had a problem with a relatively simple procedure but hey ho. I am now stuck a little,
my GP is concerned with the risk of thrombosis and has referred me to a vascular surgeon, I got an appointment within a week!
So my question if anyone has any clues is, Can a jugular be replaced and if it can, does anyone do such a thing?
Thanks for your update Peaches. Sorry to hear of your clot. I can definitely relate. I was treated in June by Dr Siskin too and presently am clotted in my left ijv, confirmed by all tests. I just spoke with the doctor and he said there is nothing that can be done.
I'm three months post-liberation and am in an exacerbation, so regarding CCSVI, I'm just going to ride out the next year or two "waiting for more research" just like you.
But I've also been trying chiropractic medicine (Atlas Orthogonal) which has helped greatly by stopping the numbness in my feet by 100% and by reducing my MS Hug symptoms by 75%. I still have some other neuro symptoms, but given time, these might be helped, too.
1 year after my CCSVI procedure in Poland (EuroMedic, Katowice).
I feel the same as before my procedure. My main problem is and was fatigue. It depends on how much action I do during the day. I am not worse, I do not have any new symptoms. I have not had any relaps. I had more energy only the first 33 days. I still take LDN. Never on DMDs. My stent if fine, without a clot, without intimal hyperplasia. My blood-drainage is very slow but it was zero before.
Dec 05, 2010
I've spent a lot of time over ccsvi also. Propaganda is flowing on both sides and it comes down to money.
You cant have one without the other and both sides are as bad as each other.
There was a post the other day about a woman selling her house to pay for an unsucessful treatment.
There are many flaws on both sides of the so called professionals. Some of the attacks are coming from people's frustrations at being shunned for giving an honest point of view.
Places like Facebook have become a minefield for relevant information, basically skeptic or CCSVI sales teams.
Unless there is full disclosure there is going to be disagreements and neither side wants to give up the golden goose to look after patient interests. Patients as ever are stuck in the middle while these greedy dropkicks argue over territory.
I'm searching for creditable answers from either side and finding very little.
Both sides are to blame.
Dec 09, 2010
I should do a little update.
I am having a relapse. It started late afternoon Dec. 3 - it means exactly 13 months after my procedure.
It was really bad the first 4 days. I even wanted to call the emergency but I was not able to move to open my eyes, nothing. The burning sensation was really strong. I do not know if I fainted or not, or just fell asleep. I had stupid nightmare. I saw flame all over my body even on my face. I really wanted to call 911. I woke up. There was no flame of course. Moreover we have no 911 number in my country. I was dreaming in English including saying "oh sh...".
It was very intensive, I was 4 days somewhere out. I am better now but of course not as well as a week ago.
Well, this was just question of time. I felt I was balancing on the edge.
I still have very strong pain behind my left eye. I do not know what to do with that but perhaps nothing.
Dec 09, 2010
So here it is. I leave tomorrow for my treatment on December 13th. I have been told by one nurse at Albany that only 15-20% have marked improvement and by another nurse that she has not seen someone who doesn't walk get up and walk after the procedure, that is takes months. So, what am I saying? Some of my hopes feel dashed.
Arlene Hubbard posted some very positive results, but she said they are not collecting this kind of information. Patients are self-reporting, but their comments are scattered over many sites and are inconsistent in both timing and terminology. [?????]
We are all different.
I was 100% for Liberation in January this year and even prepared a presentation for my neurologist.
No. I've been around the MS world for 10 years now and only encountered one person who has had a lasting benefit from Liberation. I have doubts.
This is not pure skepticism, (so don't do your usual personal attack on me, please), but more of an agnostic questioning.
Also, you criticise people for not congratulating those who have been fortunate enough to have had a great result post-Liberation, but I can't remember a single sympathetic message on the sticky tracking thread for bad outcomes from you.
This works both ways you know.
Dec 11, 2010
Facebook is a gossip column.
Dr. Sclafani's post would get lost, as do all others.
Easy to use Spam Bots.
Most CCSVI groups are 10 a penny and run for business reasons.
Most groups have Numerous Posting accounts.
Most groups have Numerous groups so dilute their value.
Most groups talk to themselves because people get put off with constant games.
18,000 is a false number hence low posting rates.
Facebook is pretty much a self promotion site.
Every forum/social site has their problems but Facebook is riddled.
On the positive side, facebook is a marketers wet dream. It doesnt cost a penny and you can post from 1000 accounts a day, each with their own auto running group.
Your Facebook mob made me realize I need to completely distance myself from all of this.
Dec 10, 2010
johnson, i'm kinda in the same boat. i got a doppler back home. they say no clots. i got a script for another one because albany wanted follow ups every 3 mo. for a yr. i want to be smart about all this but i feel so stupid and admit at this point i feel kinda like "chicken little". i know we can all restenose but how long should we be concerned about clots or perhaps damage that can result to the veins? i had no stents. have you stopped progressing? i seem to be progressing faster.
i might add, i had the procedure done and noticed immediate relief of the following three symptoms in this order. and i had the procedure done with absolutely no sedatives.
cold hands, warmed as soon as they pulled the wire out of my vein cog fog lifted 10-15 minutes after the wire was pulled, balance was nearly 60-70% better and hour after procedure,
but all symptoms came back three hours after procedure as well...
Dec 19, 2010
I was treated October 11, 2010. I have had no improvement. I was thinking that I was a slow healer and that perhaps improvement, or at least no further decline, were in my future. Unfortunately I am experiencing another relapse which makes typing difficult so I'll keep this short.
Dec 20, 2010
If Trine Tsouderos and Pat Callahan are in need of a new subject to investigate they should look into the CCSVI/Zamboni liberation therapy for multiple sclerosis, a very dubious theory and treatment that has suddenly become very popular thanks to some very poor reporting by a Canadian news channel at the end of last year. As a result of this thousands of people with MS have spent tens of thousands of dollars each to have angioplasty performed on their neck veins...a pointless and potentially dangerous practice.
CCSVI advocates have been lobbing the usual "pharma shill" accusations (and the occasional death threat) against scientists and doctors who have urged caution or argued against the theory that CCSVI plays an important role in MS, though I suspect that if anyone took a close look at the activities of a companies involved with CCSVI detection and treatment they would uncover some interesting relationships. I've also heard that the Italian freemasons are somehow involved, though just how deep the rot runs in the Italian government is not clear.
At the moment the reporting is very biased in favour of the so-called "Liberation therapy", despite the lack of scientific evidence for CCSVI being a cause of MS, and a lack of clinical evidence for "liberation therapy" having a beneficial effect. It would be good to see this imbalance corrected!
Dec 21, 2010
Last Monday was my birthday and I was hopping for it to also be my RE-birth... but no!!
This was my FIFTH and LAST procedure - some of those venograms were not to treat CCSVI but to repair complications: blocked stent, thrombosis, collapsed vein.
I said before that I could not end my CCSVI journey while feeling undertreated. My IR was always reluctant to watch Dr Sinan presentation but the week before he did and he picked up some tricks... I have no more excuses hence no more hope for this treatment, it just does not work on me! Everything that could be done was done:
Dec 13, 2010
clean up my 4 stents in LIJ and angio 12mm (even if stents are 10 mm)
Azygos: 2 waists were angio with 10 mm (a kink was repaired in a previous procedure)
RIJ: angio 14mm high pressure
In my specific case those are very big ballons because my veins are very small and stenosed by radiation of previous tongue cancer.
My LIJ was 5 mm before it collapsed down to 1mm (the size of the catheter) they
increased the size to 10mm with the stents!
I did everything by the book, I stayed in bed at the hotel most of the time for 4 days to make sure to have good blood flow thru the jug.
Do I have some regrets? NO, for the past 10 months I did not think about death everyday! Now people around me know I did everything possible, I did not give up.
One thing I don't understand: how come I never got back the "moderate" improvements I experienced for 6 weeks in April after my 1st procedure in Poland? They were not placebo, I would NOT unconsciously regulate my bowels, bladder, saliva, body odor, skin complexion! I did not know then that they were related to ms. I also had no more headache, warm hands and feet. The only improvement that stock is no more hip compensation when tire or after sitting or exercise.
Dec 22, 2010
Thank you everybody for your support and your good words!
At this point I am more frustrated than depressed (yet). I know that I am not the only one without results and least I am lucky to have been treated before it was too late and my veins shut tight irreversibly.
I figured my story was worth telling for those who start that journey thinking it is a one shot deal. Know that multiple procedures may be required and be prepared to spend a lot of money!
I choose to have the 1st procedure and the last, the 3 others: candy wrap stent stenosis let me in a worse state than pre-procedure with new symptoms, the collapsed vein made me feel horrible - I did not leave my bed for 3 weeks, the thrombosis was a no brainer.
People have to know it may cost them way MORE money than their budget for one procedure or they may end up WORSE than they are!
As for Lyme disease, I was tested in Poland. Dr Kostecki rejected around 5% of patients because of positive test.
I read there are different tests for it, it may be worth checking again.
Question: my MRI show 10 big lesions + zillions of small ones (like sky constellation at night) + lesions at the base of the neck + lesions lower spin. Is that possible with Lyme?
Dec 24, 2010
V..., I think I know how you feel. I had the procedure done twice (in Bulgaria), I got great improvements with the first but they disapeared after a week. With the third attempt. Dr Siskin said everything was now blocked 100% and there was nothing he could do. I am trying one more time with Dr Arata, January 19. He thinks he can help.
Hope he is right. Our stories seem very similiar. The frustration and knowing what I know now I would not have started this journey as it has made me more disabled than ever.
Dec 29, 2010
Okay guys, I need your guidence/advice I am not sure where to turn, if there is anywhere to turn...
I was treated Nov 30, and I didn't experience any improvments. In the days after I convinced myself it was ok, at the very least opening up my veins will slow the progression!?? Sadly I am 2 weeks into a full blown exac...erbation, prednisone RX finished and still the attack marches on...
Dec 29, 2010
I have RRMS, treatment in Florida on Nov 2nd. Came back to Ontario on Nov 4th and pain was gone, color returned and my balance improved greatly. I was still quite numb on my right side and the following week (Nov 8th-12th) I w...ent over on my ankle about 5 times. I have been in the biggest attack I have ever experienced. MS hug from my ribcage down to my toes. This past week I have finally been able to walk without the aide of a cane or walker but not for very long, the pain in my legs have finally diminished some.
I have read that sometimes an injury can cause a flare-up, but I never expected this to happen. I've been to physio twice and been faithfully doing the exercises he has given me and I think they are what's helping me.
Dec 29, 2010
My husband has received repeat angios (2) and checkups five times at Stanford. This is over a course of almost 2 years. You need an ongoing relationship with your IR, GP and neurologist. This is the same as seeing a cardiologist for a heart condition. Joan B
Jan 02, 2011
Hi, I am only patient number 2 done in Poland. I will be 14 months after the procedure tomorrow. I felt better only the first 33 days. I had a relaps one month ago.
So, I am worse. I do not know exactly what is wrong. I had follow up twice. It showed very slow flow in my stented jugular but my stent was fine, without hyperplasia, without thrombosis.
I am still able to walk with one cane but my brain fog is strong, my fatigue is a big problem, I am almost constantly sleepy, my muscles are weak...
But I was only the second...
Jan 02, 2011
Went to Sofia to have treatment all three veins were narrow and after treatment a day or two later I felt Better,for one whole month. And then it went back to how it was not really worth £5500 + £600 (meds) for a month of feeling better what to do i really like Sofia and i get it my vain must have closed but if i go back and have it done again thats plus £6000 and what if they close again
i don't print cash!! (though i wish i did)
what do to do anyone someone?
Jan 04, 2011
I had my Liberation procedure on the 27th Dec 2010, in Edinburgh right after it both my hands were tingling , and have stayed that way ever since, and have became quite sore, the tops of both legs are also tingling on and off, I was practically symptom free pre procedure. I am very despondent and need some reassurance that it may get better after time.
Jan 04, 2011
After my last procedure I found a few things got worse before they got better. I think the body is sort of shocked by any invasive procedure, even my colonoscopy caused MS to bug me.
Jan 04, 2011
I underwent the CCSVI procedure 6 months ago. I felt bad before the procedure and 2 weeks after started to feel a lot better. Now the symptoms are back. No some of the ‘scientists’ and well-intentioned self proclaimed doctors on this forum will rush to respond: “oh Asher, so sorry to hear you are feeling worse. Did you have your veins checked? Ultrasound? It must be re-stenosis. Else how come you felt better and now the symptoms are suddenly back?” Well, sorry guys, the Doppler showed no trace of a flow problem.
Well, I admit I too was hoping for a quick fix for my MS. It is a simple and intuitive explanation for a complex and illusive Autoimmune disease. The treatment is relatively simple, painless and cheap. It sounds so great, so please, do not confuse me with the facts.
‘Misguided speculation’ because the CCSVI and an MS connection is not the kind of science that is responsible for the huge advances that humanity made: fact based experimental science.
One of the fundamental attribution errors human beings make, and that is why we need solid science, is the attribution of causality. If I dance and it starts raining, it must be my dancing that caused the rain, right? These are the myths that guide many of our rituals, and much of our behavior. That’s fine, except this is not fact and not science.
Consider the post procedure improvement was a remission, and that the return of the symptoms was a relaps? And consider the possibility that this may have been the explanation for Zamboni’s observed phenomena?
I honestly mean no offense, and I don’t want to hurt anyone’s feelings, but if this is what it takes to speak out what I believe to be the truth, so be it.
As it stands, CCSVI as a causal factor in MS is at best a not very solid theory that yet needs to be proven in a REPLICABLE and controlled scientific experiment. I believe we owe all the pharmacologists, scientist, biologists, neuros etc. who are working hard and are dedicating their lives to help us MS sufferers a sincere apology. They cannot be blamed for not embracing our rain dance.
Jan 05, 2011
My procedure looked like yours. Before: symptom free. After: immediate numbness in right hand which continued for 4 months. Additionally during those 4 months some numbness in legs and torso. MRI showed many active leasions so I had to take steroids. Fornunately after steroids treatment I am symptom free again.
I go for my 3rd procedure on the 5th. Blood clot in left ijv.
David McGarry Okay, can NOT get the wire through...NO WAY. Dr. tried for about 4hrs. on Wednesday. Anyone know if surgery is an option? If so, Who/Where is the best in the USA? Clot is about 2-3 in. below le...ft ear lobe. Gawd am... I sore.
Jan 09, 2011
The procedure had its placebo effect on me for 5 mos, the last two I have been on and off with relapses. As soon as you realize this, you won't torture yourself with searching for answers.
They are not available yet.
Jan 10, 2011
I had a few days of improvements about a week after the treatment and then back to whrwe I was if not a little worse. I had my procedure one month ago.
Jan 15, 2011
You may have read that I traveled to Egypt and received treatment with Dr Tariq's (Dr Sinan's) team late December. You might also be aware that I suffered a thrombosis, (a mild thrombosis I was told by the Kuwaiti/Egyptian team) in my left jugular vein. I received an appointment letter the day before yesterday at half past eleven for an appointment that was itself the day before yesterday at eleven, to have this checked out by an NHS vascular specialist. It's to be rescheduled for next week.When I have more news I'll tell it - hopefully, at some stage, my left jugular will be clear of the thrombosis and I'll experience greater benefits than the modest ones which I have already experienced.
Anyway, what I am writing about here is that, worryingly, I received a message from a man who was treated in Alexandria late last year and also suffered a thrombosis. He said that he thought at least one, perhaps two of his month's group did so too . On further investigation I have found out that another man suffered a blood clot that required prompt first-of-its-kind surgery.
Jan 14, 2011
Unfortunately, I am one of those few challenging patients that had awesome improvements after my first balloon in Sept. and no improvements after the second in Dec. I am working with Dr. Saxon at Del Mar Vein Clinic through the Hubbard Foundation. Now I have to decide if a third time will do the trick or if a stent is the only option.
Jan 17, 2011
I had my first procedure done last Monday, left jugular and azycos chest vein. I went for second procedure today to have right jugular done. It was discovered that my left jugular had clotted and was showing colatterals for the blood flow. I asked my Doctor last week if he used blood thinners, and his reply was no, just asperin. Unfortunately now I need to go on blood thinners, Lovenox, 2 shots a day for the next 3 months to make sure my right jugular doesn't clot as well as making sure my left jugular doesn't clot even more.
The reason he suggested Lovenox is that it doesn't require any blood testing while using it.
Jan 17, 2011
I did it Dec 24 2010. Dr. Arata told me it will take a few months but no guarantees. So far I feel my mental fatigue is less BUT my physical fatigue has increased significantly. EVERYTHING ELSE - pretty much the same, though I am told I look better (less glazed). This could be fatigue from the surgery.
Hello everyone! I got my CCSVI procedure on Oct. 27, 2010 and everything was fantastic! On January 12, 2011 I believe I have re-stenosed in my left jugular. :( All my symptoms have come back at once.I am putting together a Valentine's day basket to raffle off to help raise money for the $8800 procedure in Seattle..., WA. (at least I don't have to travel out of state again!) I have no insurance and need help. I have also set up a PayPal account just for this-if anyone is interested in helping me out. :) Thanks to everyone so far that has helped and donated things for the basket!
Jan 26, 2011
Well, John was doing great for about 6 weeks after angio and now seems to be regressing! He is walking worse than before the procedure and the headaches have returned.
John is going back for another procedure with Dr. Sclafani. Hopefully he can get this darn jugular opened and make it stay open! The first procedure was pretty aggressive with a large balloon too.
I do want to mention that John's fatigue is still GONE though! So, that is a good thing.
Any thoughts on why elastic recoil happens?
Jan 19, 2011
D... is now more than 2 months post-CCSVI-procedure. The benefits from the procedure have either plateaued or perhaps regressed a bit. The severe spasticity has returned, together with the pain resulting from it. Her energy levels continue to be at a higher level, which we attribute to the procedure, but there are cognitive setbacks as well.
From the numerous friends that we have who have had the procedure, we have learned that they have all restenosed and I’m concluding that Deanna has restenosed as well. Those same friends are having another IR / angioplasty procedure. So we are considering it.
Feb 03, 2011
Hello, I had 30% stenosis in LIJV and 50% in RIJV...had procedure on the 20th of Dec. did quite well with result's...balance, steady gait, bladder much improved, MUCH LESS SPASITCITY...in the last week steady decline...question being: Is there better result's getting the procedure done again the second time? Or is it likely for the stenosis to happen again so quickly?
Feb 10. 2011
CCSVI in Multiple Sclerosis Frent--Dr. Zamboni's patients had a 47% restenosis rate in the jugular veins. The other half of his patients' veins remained open at 18 months. My husband's right jugular has remained opened at 2 years...but his left did not. It's important to work with local doctors who can follow you and give you ongoing treatment....just as you would see a cardiovascular doc. Joan
Feb 16 2011
So my Neurologist called yesterday and tells me she has news about my MRI/MRV that was done at USC, She tells me I still have a lot of stenosis in both Jugulars, At least she admits I have stenosis, That's good she's coming around to CCSVI, Bad news is she says I have a new Lesion in the Pons in my Brain
Feb 14, 2011
Had the procedure on 16th jan in egypt. No change/improvements. I have had the ms symptoms 4 1/2 years. Bladder urgency and frequency and only able to walk 5 or 10 min.
This last year I have noticed my balance is not so good either. Do I regret having the procedure ? don't know...I would be always wondering if I hadn't but now I am in debt.
I had the procedure done and a few days later had a fairly bad relapse. In fact, most of the improvements I realized from my stem cell procedure had returned. Now, about 6 months after the procedure, I seem to be progressing, even though I was RRMS before the procedure.
My objective isn't to deter you from treatment, that decision is yours. I just hope to inform all those reading that not everyone experiences great results. In fact, some do get worse after the procedure. Those who have gotten worse have mostly stopped posting, or their threads have moved so far down that virtually no one reads them.
to be continued ...