May 31, 2011
Hi, i am after one liberation, still no restenosis (and i did the procedure more than a year ago!), but...i got a relapse, and from yesterday till friday i am on steroids... And? What you say?
Jul 17, 2010
For myself i've been liberated on 8th of july they hard a hard time finding one vein... (or have they find it)now i'm sittin home returned from Poland on the 12th of july with no improvement at all. anyone seen a restenosis in a week !!
I feel like crap with 13.000 less in bank account.
Jun 01, 2011
Mitch, I, too, had high hopes for the CCSVI treatments, but held off doing it without more 'proof.' Now, I'm not even thinking about it. My neurologist never hung a title on me -- I just figured I was RRMS. However, I've never had exacerbations, never relapsed, and never went into remission. I was on 2 different DMDs (Avonex and Copaxone) until I realized they were doing nothing. I really believe I'm PPMS, and as you said, no treatments are available.
So, I'm pretty much riding up that proverbial creek behind you, and no oars are in sight!
Jun 09, 2011
I just had an ultrasound on the stents in my neck. I already knew that my left stent was occluded in March. This time the IR discovered that my right stent is also occluded. I think this must be a new record. The odd thing is that much of the symptom improvement I noticed last September after my first procedure I still fell. Last summer I felt absolutely lousy, I'd say 100 where 100 is the worst I have felt. I went to zero (GOOD) in September. Now I am about 20 on my symptom scale. The IR I talked to (he is very good) told me that these are at the moment not fixable except with open surgery and he recommends against it. Maybe my neuro was right....
I took a risk and lost...
Jun 14, 2011
I am one of the frustrated ones. Joined in Dec. 09 and was in line for treatment at Stanford when they pulled the plug. Finally got treated in So Cal, but the benefits lasted only a couple days, and when I finally got follow-up check-up (at my own expense, of course) both jugs were restenosed with doppler showing reflux. My BCBS is refusing any payment, and I cannot pay the aprrox 10K out of pocket for retreatment that even the doc says will probably not result in little lasting improvement, so I am not sure what to do. I really don't want a stent. With PPMS I am sure that most of my nerve damage is permanent, but not sure what else good might come of retreatment.
May 18, 2011
We are back, sorry it has been so long, since Oct'10 when we went to Bulgaria..... So just a quick update ... L... is not doing well at all after Bulgaria, she had no benefits at all and is in fact worse than ever... We have now decided that she will be third time lucky and we fly to California to PI on June 29th(livabirds birthday), consultation with Dr Arata on June 30th, procedure on July 1st(Canada Day, quite fitting) We will then just relax and have a family holiday until July 18th.... As always we will keep you all up to date with her progress and our hopefully not so adventurous adventure this time, as you remember Poland was the volcana, Bulgaria was the robbery.... so California, well they are due for an earthquake Cool Cool Cool , but not while we are there... Anyways good to be back and sorry we don't have any better news... but we will keep going.....
May 18, 2011
I am annoyed at the fact that people making any negative comments about a treatment centre are criticised. There are many people who are still looking to be treated and I think it is important for them to have all the facts. L... hubby is allowed to comment that the procedure did not work for his wife and to criticise the centre if he decides to. I however will say not only did it not work for me but I got a P.E and clotted vein whilst still in Bulgaria...I called the emergency dr in 8 times that night plus I reported how I felt to both main Dr's at the centre and was not helped at all. I am fully mobile and do not lhave a physical disabillity so spent a lot of time chasing dr's and nurses around the corridor begging for someone to help me, when that failed I got on a plane risking death back to the UK where I was promptly treated with heparin and given oxygen as the P.E had severely affected my ability to breathe.
I am very annoyed at the treatment I received in Bulgaria and feel to this day I am lucky to be alive!! So sorry for the rant but I do want people to know if they are going to Bulgaria (which I strongly suggest they don't) to bear in mind my experience.
I did get robbed and injured!!
Jun 04, 2010
... I`m one that finds new issues post-procedure, but still have at least eliminated my limp. I see stories of so many who have `brand new lives`post-procedure, and hoped that for myself, but it doesn`t seem to be that way for me, at least not now.
There have been no answers as to if we can fluctuate from good to bad, and back to good post-procedure while still having clear-flowing veins.
So I wait, hoping that I have a future which includes a decrease of MS symptoms.
Jun 22, 2011
I had bilateral jugular blockage, was treated in Sept. 2010, had improvement for 2 or 3 days, developed very sore jugulars, and the improvements went away. I did not get follow up diagnosis until March 2011. at that time, I had bilateral jugular reflux , diagnosed per color doppler ultrasound. The testing was done at the American Access center in San Diego by a technician recently trained in the Zamboni procedure at Sclafani's center in New York, so I have good trust in the results. In consulatiation after the diagnosis, the interventionalist in San Diego, Dr. Rattner, said he didn't really think I would see any improvement if I had the procedure done again. I was originally hoping only that my progression would stop, but there is no evidence that that happened either. My insurance no longer covers this. I really, really don't want a stent at this time. I can't afford to keep paying for treatments out of pocket, and the longer I wait the better info we develop, my progression is very slow, so I have been sitting on the sidelines so far.
Jun 27, 2011
Well, I had round One and great but temporary results (few weeks, June 10, India), so round 2 with bigger balloons and great longer lasting results (6 months, Aug 2010, Mexico) and then Round 3 with no results Mar 11 PI California, US). My veins were already clear and open.
But symptoms had come back. I had no relapses from the first treatment (Round 1 on) until Jan/Feb 2011, and thought it was restenosis until Dr Arata told me it was not.
Jun 27, 2011
Treated Jan 3rd, 2010. Worse than before.
Jun 27, 2011
Treated by Dr McGuckin at VAC California, 80% stenosis RIJV 50% LIJV, Azygous 50% and 40%, Left Iliac vein 50% stenosed, Improvements= Less cog fog and better memory, HD like dreams, feel more rested in the morning, Numbness in leg and arms better, All over body weakness improved until after 6 days after procedure, Wen't to bed with pain in legs and woke up with a return of the weakness
Jun 29, 2011
i had the ccsvi procedure and well, i am not feeling any different. the doctor found 30% blockages in both my internal jugulars and azygous. they were all ballooned open. i am wanting to know if the changes are seen immediately or can it take time and if so how long?
Jun 30, 2011
Update: Had the procedure done in Poland in October last year, nearly 9 months ago. Both jugulars. In brief: No improvements, in fact it seemed to accelerate symptoms. Told to wait and see, waited and see'd - nup, not a thing except going downhill faster. Been too ill to go for follow up, so no idea whether I have re-stenosed or not but it doesn't really matter, I wouldn't go for the procedure again so soon. Would rather wait for the procedure and veins checked to advance than risk un-repairable scarring and ruining the veins beyond help. If I had had any benefits perhaps I would but I didn't so i'm not convinced that the right veins were covered.
Not worth the risk right now.
July 3, 2011
I've been treated for CCSVI 3 times... twice in Egypt and then in Newport beach. I am one of the unlucky ones that has experienced few good effects. I have been on a steep decline, from RRMS to SPMS, from being super-healthy and practicing yoga to being in a wheelchair.
Jul 03, 2011
Had my procedure about two weeks ago and have had the weirdest recovery. Bilateral jugulars were angioplastied but not the azygous. I was really sore after the procedure around the jugulars (normal). Then had pressure in the middle of my chest for about a week after the jugular soreness went away(abnormal). Then had bad neck soreness, felt like a pulled muscle or pinched nerve (abnormal ). This morning I am back to having bad left sided jugular soreness as if it was the first day of the procedure. Symptomatically, I felt great for about a week. I had increased sensation in my hands and feet, warmer hands and feet, better balance, better coordination, no more MS hug, no more restless legs and what felt to be better gait. Some symptoms seem to have gone back to pre procedure status.
Jul 03, 2011
I keep getting worse. It has been a year now. My legs tire so easily it scares me.
Tracking those of us worse? Heck no.
Jul 03, 2011
It has been a whole year since I had my first treatment that gave me wonderful improvements that only lasted a week. I tried again, never recapturing THOSE improvements and tried 3 more times but unfortunately Dr Siskin, who did the third try and Dr Arata who did the fourth and fifth try could not do angioplasty due to the scarring that was blocking all 3 veins.
I continue to become more and more disabled.
My left side is almost totally paralysed. I cannot move my left foot or even a toe. No longer autonomous, and I live alone.
Jul 05, 2011
The procedure is in it's infancy. It is still evolving. I am a perfect example of what can go wrong. I had my first procedure June 2010. And I did get great, immediate improvements. But the only lasted a week. I restenosed but NOW the stenosis was more than the original. Tried again, but I did not get the response like the first time. Tried again and this time the doctor said my veins were blocked with scarring. Nothing he could do. Tried again and another doctor said the same Blocked with scarring. I have zero blood flow in those 3 veins, plus the 1 stent I have is pinched and bent at 1 end. I am sooooooooo much worse. I regret jumping on the bandwagon so early. At that time there was no negative info available. As a matter of fact THEY said you may not improve but it will arrest the progression. Well, we now know that is not true. If you are to have it done, best to have it done once. Dr Arata says that with a 2nd, 3rd etc, you do not get improvements like the first time. Why I do not know. All I know is that when the blood is flowing you get improvements.
Jul 07, 2011
Hi fellow MSers, My veins stayed opened for 7 months. I'm going to Bulgaria for a second procedure. My procedure is August 8.
Jul 07, 2011
Devin has requested that in the spirit of full disclosure I share with you that after 14months, symptom free he has restenosed and had a recurrence of symptoms he had in 12/09. It seems to have occurred acutely after having been yelled at by someone. Stress has been the instigating feature in each one of Devin’s attacks. He had a short course of oral steroids. I know many of you have posted that taking oral steroids without the more standard infusions was not the best treatment. We conferred with Dr Burks and oral meds alone are now considered to be a viable option.
Jul 08, 2011
I agree with D... I am now without a functioning right IJV (fully scarred) It was 100% open and working before.
Jul 21, 2011
The man that had the vein graft in India is not doing well, living in a facility where he is being looked after. His transplanted vein collapsed. And I know of too many that now have one or more, scarred veins. I asked all of them if they had been treated with chemo or radiation and all said no, never. So, our theory that this was the reason for scarring, does not hold water. Luck of the draw I guess. I know only of 1 doctor that has treated 2 patients with vein grafts, Salvatore Spagnola in Monza Italy, successfuly.
Jul 23, 2011
..Dx with RRMS in '06 - fatigue, right foot drop 1st Angio in Poland Oct '10, a week of good results, walking "normal." However, sadly short-lived. Just returned from California following a 2nd Angio with Dr. Arata. I'm on day 9 post procedure and nothing, maybe even worse - cold right foot and part of lower leg, fingers on right hand cold and numb. I was told that the diameter of sections of my RIJ were the width of a strand of hair -"lots of scarring, possibly from 1st Angio or neck injuries in past.."
I'm investigating the whole vein bypass, grafting, transplanting with much frustration and all remaining hope is slipping away...
It's so true what you guys were posting about face transplants etc. I guess those docs are making more money??!!
Jul 25, 2011
I've had MS for over 17 years and I had the Liberation Procedure done in November 2010. I experienced remarkable improvements in fatigue, balance, numbness and my brain fogginess lifted. Over the past several months I have been experiencing a gradual increase in these symptoms with a marked worsening recently and I'm considering having the procedure done again.
Apr 12, 2011
First., they told us it is a safe procedure and the worse case scenario is your situation does not change. And there is the upside. This sounded really good. Smile Now, we find out that most of us get restenosed and many people's condition gets worse than it was before the operation. I am afraid that it is only the tip of the iceberg what we see here. Neurologists in the home countries of the patients talk about more serious cases. Even those who were enthusiastic about this procedure.
It is also interesting that talking to IRs not benefiting from CCSVI money have a much more balanced view on this procedure. I can also just refer to a well respected vascular surgeon whose hospital do CCSVI operations. He told us (and I can see he was reffered by others as well here on different threads) that he sees many of the neurologists concerns well founded and he sees risk in many of the currently used techniques, like using large balloon, breaking annulus, dilating veins unnecessary, etc. It would be good to draw in other doctors into the process from different fields (IRs, vascular surgeons, neurologists).
I still beleive that neurologists are key to this process, we need them. It also makes me think why those IRs who were doing these procedures did not have any concerns about the problems we are facing today.
Jul 28, 2011
I had scar tissue form in my LIJV where I was angioplastied (no stent) and, you're right, it's the same thing as a naturally-occurring stenosis as far as blood flow is concerned. I hope taking fish oil will help prevent further scar tissue from forming, which is what I'm doing post-treatment the second time around.
Aug 06, 2011
But by the second-month anniversary of my "liberation," I had still not had the dance with my stepmother that I had promised her. Heading into that third month, things began to slide. The chronic body pain came back, spreading like a stain from fingertip to toe. I gave up my stubbornness and embraced my pain meds. My feet were back to their familiar violent purple hue. I can only assume my veins had restenosed or closed in on themselves again.
So it seems I spent more than $10,000 to get pinker feet for two months.
Aug 08, 2011
Just posting after being away for so long. The thread said post if CCSVI did not work. It did not work for my boyfriend and he had it done twice.
Aug 10, 2011
--My husband is not back to normal, or symptom free. Venoplasty has not relieved my husband's neuropathic leg pain and occasional numbness, which is from damage that was done by his first flare. He still has a lesion on his cervical spinal cord, which may remain the rest of his life. This damage may be permanent, like stroke damage. What venoplasty has done for him is relieve his cerebral symptoms of fatigue, heat intolerence and spasms, and has slowed, if not stopped, progression. To call venoplasty a "cure" is to promise 100% return to normal...and we can't do that. It raises false hope, and leaves people disappointed after treatment if they cannot walk or return to life before MS. Damage to the CNS, especially spinal damage, is hard to overcome. But I still believe we need to understand the role that CCSVI plays in MS progression. Still, I will not call venoplasty a "cure."
Aug 17, 2011
10 months after a trip to Albany and getting some results (fatigue, cogfog) albeit for only 8 days, I thought I would try again. This time in Brooklyn, NY. Having followed Dr. Sclafani’s thread since day one, I was officially converted after reading about IVUS on several threads. Being able to confirm the location of stenoses while avoiding under/over treatment seemed pretty compelling to me. After a consult with Dr.S on Thursday (Aug 4th) I prepared to come in early Saturday AM but I did not hit the table until 4pm. Dr.S had a challenge on the Friday which subsequently needed more attention on Saturday morning. My procedure was not case-study material with only garden-variety valvular stenoses found in both jugulars. I got a chance to see IVUS in action. Got a bite to eat near our hotel and walked 3-blocks home (hotel). I felt as though I could’ve walked another ½-mile but thought I shouldn’t tempt fate. Next few days were interesting as I had improvement in a variety of areas beyond cogfog & fatigue.
• Spasticity completely resolved (as far as I could tell)
• Cogfog as well
• Fatigue improvement but not as dramatic as in Albany
• No improvement in balance Sad
• Bladder: little or no urgency after beer(s)
• Reduction/elimination of visual disturbance when twisting head
Heat & humidity was troublesome for this westcoast rainforest kid. Along with changing hotels, plane and car travel, the following week was a challenge. If I go back East again it will be in Spring or Fall! I’ve been back home for almost a week now and my symptom profile is pretty much where it was before embarking for Brooklyn.
Aug 21, 2011
I have no pride.
I am SO scared and indecisive!!
(I) was angio'd in Dec 2010, local Vas Surg...did pretty well--several improvements until 08 -18-11 new numbness that within days rendered me ambulatory ONLY with Walker--previously I used NO Ambulatory APPLIANCES! Hospitalized...MRI showed New 'Lesion' on spine...is this an unrelated to AngioPlasty FlareUP...? or part of MS ? Dear GOD, I was SO Hopeful!!