I'm 42, from the UK and was diagnosed with RR in 2000. I'm still pretty good and drug free, and haven't seen a neuro in five years or so. I now have an opportunity to have the liberation treatment conducted in Egypt by CCSVI specialist Dr Tariq.
He seems to be a bit of a pioneer in this field, and maybe the best person for the job. However I did start to think that i may be rushing in to things too quickly and ought to weigh up ther pros and cons. There is so much information out there on all this stuff and my head is spinnng to be honest.
I really believe that blood flow and oxygenation is the key. I'm very well-balanced and clear headed; I just can't run!
My only recurring and annoying symptom is my fatique. I can walk at a pace for 400m, but then I start to "seize up". If I rest, I recover half an hour later. In fact, it seems that as soon as I try to do anything remotely cardio-vascular, this happens. Also, how come I only get leg spasms when lying down at night?? It all makes sense to me, and if a Doppler shows senosis, I can think of no reason to not have the liberation done.
I visited my GP, and told him about the treatment (he had never heard of CCSVI) and was expectedly cynical and certainly very unhappy about me seeking treatment from a Kuwaiti radiologist. So I'm looking at my options and maybe it's best to get the procedure done in Europe or the US; but how do I go about finding someone who has the necessary interest and experience?. Has anyone in the UK had any experience in this and can offer an opinion.
I think aftercare is an issue... what happens if there is a complication when i get back home? This will be an issue wherever I have it done.
Thanks for listening, I would love to hear from anyone with an opinion on all this!
first of all welcome.tuftyone wrote: So I'm looking at my options and maybe it's best to get the procedure done in Europe or the US; but how do I go about finding someone who has the necessary interest and experience?. Has anyone in the UK had any experience in this and can offer an opinion.
i am not from the UK so I can't answer your second question but I can answer the first. i am a caregiver who went to Brooklyn earlier this past fall. we saw Dr. Sclafani. if you do a search here on this forum, you will find he is a member who posts quite often.
when i began my search for treatment, i studied him here. if you read about him you will hear he is the best, he uses IVUS, blah blah blah. I will let you read about him and form your own opinion (as best as you can considering this is the internet).
i will also offer my own experience. as i said, i did read about him (as well as other places) and i was influenced by what i read. i was convinced he was the best. to be honest, he was not my first choice. it was actually The Hubbard group. but everything i read convinced me of his skills.
one thing i couldn't stop thinking was that he was only after the money. Lets face it, a couple hours of his time and it costs $10,000 USD. a study done in Canada shows the actual cost to be closer to $1,500.
regardless of the cost, the evidence is there that this works so off we went. i think it took a couple weeks total time to get all the preliminary stuff done (paperwork, hotel, flight, etc.). my opinion of Dr. S and his staff is okay. i have no complaints, everything was done very well. they even offered assistance in the event that our local Dr. didn't approve of us going to the US (you need prescriptions and tests before you get to the US).
i also read it was better to avoid flying as long as possible afterwards so we decided to drive (what a great decision by the way - we drove home thru fall colors in north eastern US). the hotel and surrounding area was fine. again no complaints although the hotel was not the best but that is not Dr. S's fault.
then it was time to go to see him. Oh my gosh. Its a bloody hole in the wall basement clinic in the slums of Brooklyn New York. what have i gotten into.
okay lets re-evaluate this. look, the houses arround here aren't that bad. actually they look kinda nice. sort of like the old Cosby show on TV. okay, lets go inside.
once inside it was like paradise. yes it is a typical clinic but it was clean and modern, certainly not what i expected after seeing it from the outside.
the first thing was the doppler exam. this is the third doppler my partner had. my opinion - top notch.
next was the consultation with Dr. Sclafani. the agreement was an hour of his time and i was watching the clock to be sure we got the full hour. i think it was 2 hours later that i said "ok, we have to go eat now". my partner commented that he did tests her neuro never did.
in my opinion Dr. Sclafani is very passionate about what he does. yes he stands to make a ton of money from this but he is after more than money. he really cares about CCSVI and the affects it has on his patients. i am saying that honestly without any financial compensation from him or anyone else. it is my opinion based on my experience with him.
the actual procedure was great (again in my opinion). he told us it would be about 2 or 2 and a half hours. he spent over 5 hours. he just wouldn't give up on one problem.
the after care was also great. boy what a difference in his appearance before he started the treatment and after. he looked like he had run a marathon. he spent a long time explaining what he did, what he found etc.
my partner also said she was happy with the procedure (this was her second treatment).
thats my story.
in my opinion, the best doctors are now in the US. if you can afford it I would suggest going there.
having said all that, this is not intended to influence your decision to have the treatment done. it is only a suggestion of where to have it done once you have made the decision to do it. there are many treatment options out there. Venoplasty is only one.
I think I'd like to write to Dr Sclafani indepentley from this forum.
Does anyone have his conytact details?
As for you spasticity being worse when you lie down, (I have the same problem) my OT said the spasms originate from the cradle/pelvic section of our body.
I received treatment from Dr. Sclafani in Brooklyn and would recommend him hands-down. He takes a very logical approach to CCSVI care, which leads him to choices such as using IVUS to measure the vein precisely before choosing a balloon size, and entering through the saphenous vein in the leg instead of the femoral vein in leg to limit damage to the femoral vein, and using anticoagulants afterwards when many IRs were only using antiplatelets, and a thousand other such fine details.
It sounds like you have fairly mild MS, all things considered? When you describe having issues with anything cardiovascular, that's something in which I saw improvement. I can exercise now without getting hit hard with the fatigue. It's really different from before.
If you are looking for a doctor closer to the UK, Dr. Reid of EHC has an excellent reputation as well.
thanks for all your replies
Many doctors (Dr. Zamboni, for instance) believe MSer's should only be treated in double blinded clinical trials right now, or after they are completed. It seems the more studies that are done, the more conflicting data is accumulating that questions whether CCSVI is even more prevalent in MSer's than healthy controls, let alone whether it is pathological even if it does exist. The treatment results are certainly all over the map with countless people not experiencing any enduring benefit, with subsequent treatments appearing to be even less effective than original ones which could lend itself to the presence of a strong placebo response.
There is also no data on safety of some of the more aggressive treatment methods being undertaken let alone any evidence of greater efficacy of these methods for treating CCSVI that have not been evaluated in any clinical setting before and may raise the risks of injury or harm.
It is a lot of money with wide diversity of treatment approaches and responses, no data on safety or efficacy for many of the approaches being used, and conflicting data on whether CCSVI is even pathological, much less its alleviation a health benefit and to what extent and for how long. As remarked, every catheterization and ballooning impacts the veins in a deleterious way. There is also much to be learned about veins that is not yet known. The process of dialysis in veins changes them and so we may not be able to compare the safety of angioplasty for damage done by dialysis to the harm done to MSer's veins from angioplasty - our veins are very different and the vein anomalies being treated are very different too. I don't think you can use dialysis patients as any sort of example of safety or efficacy for how treatment of MSer's veins will turn out.
Dr. Zamboni encourages MSer's to wait for trial data. The US, Canadian and UK governments believe CCSVI treatment is experimental. Please consider the whole picture including the devastating results that a number of people have suffered, including the deaths. This is not something to be undertaken lightly.
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Please read the thread ' Gold Standard Diagnosis'. Unless the investigator uses catheter venography in combination with Intravascular Ultrasound (IVUS) your diagnosis may be incomplete. This is fairly expensive and if MRI is included (EHC Scotland do this) the total price is high. Please do not fly after the procedure (10-20 days) or you increase the risk of thrombosis.
Happy to advise on the other thread. My story is below and I had a second procedure with Dr S in Jun 2011.
I'd love to discuss this and your experience one-to-one... would there be an opportunity to do this?
Aftercare is indeed important. It may be smart to have a doppler ultrasound scheduled for one month post-treatment before you go get treated. Also know that some patients have complications such as clotting that can require another procedure to fix, lest you end up with the occlusion of a jugular and potentially worse cerebrospinal drainage than how you began. I could see it being smart to have the money in hand for two procedures before going for one. Many people don't have complications and don't need that, but it is a way to plan ahead in a spirit of caution.
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so consider with much thought. you have much more info. the good "and the bad" than the early ones treated.
the best to you.
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