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devine wrote:I am far too weak to make the long flight from Montreal to Bulgaria.They left the stent in and but removed the clots.
Hi Dania, I`m really sad to hear the bad news.. I am also from Montreal, i`m sure you have but did you try to get any doctors here to help you. or are they trying to rub you off like they don`t want to touch you cause you went out of the country for help.. Has your neurologist in Montreal been following you to see if he can get any help for you. Has any doctors (either the one`s in Bulgaria or the one`s in Montreal) suggested to you what they can do to help you... sorry for all the questions.. it`s just that come October I have to make a decision on stenting or not... and what to do if something were to go wrong the kind of help we can get in our own country.. is a big factor on my decision. Do you regret getting this done or do you think they will eventually be able to help you.....
thank you and sending wishes and positive vibes your way so you can get stronger .
Donna[/quote]
I have been in contact with my GP and I sent an email to my neuro. waiting for his reply.
So sorry things haven't worked out very well for you. Are you taking blood thinners, anticoagulants? These might help prevent the clotting around the stents. I hope there is a Doc that will arise for your scenario.
Hey Ven,
My husband cut out all bread ( hard to do when you like to eat) and he ate a fair amount of Grapefruit-- a fat burning food and it takes away the desire for other foods, also live on salads they are good for you and you can put lots of healthy things in them!! Hope this is of some help!! Mostly it is hard discipline!!
Papa
I have been on anticoagualants for many years as I have 2 conditions where my body produces blood clots easier than the average person.
Good luck with getting in touch with your dr's as I tried getting an appointment when I came back from bulgaria as per dizzy spells and low blood pressure causing this... but my neuro's secretary never tried calling back and I had left 4 message and also sent an e-mail with no success... only thing I was told by her was that the she doesn't know why i'm making an appointment because the last time I saw him was in March... I did explain my symptoms on her answering machine but refused to give me an appointment... so I've given up and my gp will be back from maternity leave end of August so I have an appoint only then... Keep us posted and hoping you lots of luck and health in the near future...
Donna
Last edited by devine on Thu Aug 05, 2010 10:46 am, edited 1 time in total.
Good luck with getting in touch with your dr's as I tried getting an appointment when I came back from bulgaria as per dizzy spells and low blood pressure causing this... but my neuro's secretary never tried calling back and I had left 4 message and also sent an e-mail with no success... only thing I was told by her was that the she doesn't know why i'm making an appointment because the last time I saw him was in March... I did explain my symptoms on her answering maching but refused to give me an appointment... so I've given up and my gp will be back from maternity leave end of August so I have an appoint only then... Keep us posted and hoping you lots of luck and health in the near future...
Donna
It seems my neuro thinks my problem is not with blood clots but my symptoms are because the MS. They are not listening.
Tell me, did your heartrate increase after the procedure?
Hi Everyone,
I returned today from Europe (procedure in Sophia July 27th then three nights in the Netherlands before returning to B.C.)
The friendliness and positive support from the other Canadians there made the 6 days very enjoyable. The night we arrived, we were asked to join a farewell dinner with 10 or 12 people about to leave the Greenville which was a wonderful opportunity to learn more about the procedure. Six nights later, our farewell dinner dinner consisted of 32 Canadians - 15 post-procedure patients and their escorts.
Some comments about the procedure: Dr. Petrov was away in New York most of the time we were there and so other doctors (at least 3) were doing the procedure. All feedback was great; the doctors were skilled, congenial and spoke very good English. In other words, don't worry about which doctor you get. Not all of the nurses spoke good English. I was frustrated one night after I sweated (one of my "improvements" ha ha) through my nightgown and asked the nurse for water. She didn't understand. Several of us commented on the pain that is associated with the ballooning. This is not meant to scare you as IV pain medication is readily available. We felt it was something that had been underreported here, so the intention of mentioning it now is just to make you aware and prepared for a little pain - it's common.
False Creek Medical found "soft signs of CCSVI". Dr. Grozdinski quickly found both jugulars blocked 50 to 70% and the azygos blocked 100%. I've been secondary progressive for a year officially and my improvements to date from the venous angioplasty are mild, but certainly welcome: improved bladder and bowel functioning, sweating (well could do without), improvements in the right leg and foot (which haven't resulted in improved walking,but hopeful they might). I can put my pants on much more easily!
I was offered Euromedic in Poland the same week as Bulgaria and have no regrets that I went to Sophia. If you have a treatment date coming soon, relax you'll be in good hands at Tokuda, a modern, well-equipped hospital.
Kar
So sorry things haven't worked out very well for you. Are you taking blood thinners, anticoagulants? These might help prevent the clotting around the stents. I hope there is a Doc that will arise for your scenario.
Hey Ven,
My husband cut out all bread ( hard to do when you like to eat) and he ate a fair amount of Grapefruit-- a fat burning food and it takes away the desire for other foods, also live on salads they are good for you and you can put lots of healthy things in them!! Hope this is of some help!! Mostly it is hard discipline!!
Papa
hello,:)
thank a lot for your replay i will try to stick on salad which i dont real like lol but there is nothing i can.
My problem is exercise its hard you dont do nothing i only do 2hrs swimming a week maybe it will help.cause am about 7kilos over weight and am on steroids every 2months now which make it worst for me..
thanks for your time hope we all be cured 1day finger crosses
i try this email again.am not that good not infact i had to start steroids every 2months now.I book to go back om october maybe i need the stent i dont know.after that am thinking of the stream cell then we see>>\
how are you doin and did u do ccsvi?
Congrats Kar. Great seeing you and everyone else starting to see results. I often speak with my wife of how fantastic everyone was at Tokuda and we both agree that our decision to go to Bulgaria was the right one for us. I have since my return booked a follow-up appointment at the Barrie Vascular clinic in late September with Dr. Sandy MacDonald and his team. I will have a doppler ultrasound to see how things are at that point. Hopefully all remains Status Quo. I have continued to see positive results and only hope this continues to be the case. I have attached a couple recent video clips, one which is my after video and the other a news interview. Be well.
Good luck with getting in touch with your dr's as I tried getting an appointment when I came back from bulgaria as per dizzy spells and low blood pressure causing this... but my neuro's secretary never tried calling back and I had left 4 message and also sent an e-mail with no success... only thing I was told by her was that the she doesn't know why i'm making an appointment because the last time I saw him was in March... I did explain my symptoms on her answering maching but refused to give me an appointment... so I've given up and my gp will be back from maternity leave end of August so I have an appoint only then... Keep us posted and hoping you lots of luck and health in the near future...
Donna
It seems my neuro thinks my problem is not with blood clots but my symptoms are because the MS. They are not listening.
Tell me, did your heartrate increase after the procedure?
Dania,
All what I can say is listen to your body it`s talking to you... Your doctor doesn`t live or feel your symptoms to know what your feeling inside... I would go and get a second opinion... As I was proven time and time again over and over with doctors telling me wrong answers and me getting second opinions to find out I was the one that was right... As westmount told me nothing was wrong with my viens and decided to go to Bulgaria to find out there were blocked in three places two that were criticall (over 90%) and one that was 70-80% with one of them twisted... so if I listened and believed the first doctor I wouldn`t have been operated on... go with your heart and get a second opinion.. there human and make errors too. I didn`t notice if my heartbeat increased at all after procedures so i`m assuming not... I know before procedures I would ocassionaly have heart pulputations... Good luck and keep us posted.
To all the other people who posted and came back from Bulgaria happy to hear your seeing some improvements... good luck
Ales, I'm so happy that your procedure was a success. It brought tears to my eyes. My husband goes to Bulgaria in September and it can't come soon enough. Take care and I'll pray for your continuous healing.
OK. This to me is pretty huge. I just mowed the lawn for the first time in at least 3 years. I am tired but not exhausted and I have no pain in my legs. It has now 16 days since my procedure and though the lawnmower helped me out as far as standing I did it. before I would need to sit down for hours afterward and would be in so much pain. I have not had any pain since my procedure and hope the same for everyone.
Like many, we also just returned from Bulgaria and our CCSVI treatment. Firstly, we have to commend the staff and facilities at Tokudo hospital as they were top notch and very competent and professional. We also are quite thankful for the warm welcoming we received by all those whom were also there being liberated. It really makes you feel at ease to be instantly accepted as part of a large family. We will never forget sharing last fridays dinner with a group of 38 of us at the Greenville Restaurant -all of us either just liberated or being liberated.
Sandra's results are not huge by some standards but her improvements are to us. We are excited and hopeful that they will continue to be so as we recover from the long trip and jet lag.
For those waiting to go, rest easy as you are in great hands in Sofia. We have no regrets. ......I even had a chance to test their emergency treatment when I suffered a bout of food poisoning (another story for another time). They were fast (no wait at emergency ??), professional and cost me very little.
Anyway -to all we met while in Sofia, best of luck in your recovery. You are all part of our Sofia memories.
Thank you Ales and Robsan for posting all your positive experiences in Bulgaria i am going in oct and feel very positive. I won't be one of those miracles as i am progressive and have had this 30 years but am hopeful for small things. I had procedure in poland but they did not treat azygos were i believe a lot of my problems are associated with. Keep posting will look forward to hearing.
Thanks Ales and RobSandra for up-dating- good to hear from you.
I notice on my discharge medical report from Bulgaria that they have stated that I have CCSVI Zamboni Type B. I wasn't aware that there was a classification system. Beside Type B it states "stenosis in both jugular veins and total occlusion in the azygous vein" - I guess that's the definition. I'd be curious to see what other types people have. Anyone care to share? Perhaps this is lingo that will become more familiar to us in the months ahead.
On another note, I had dinner with a friend here in B.C. last night who has just returned from Euromedic, Poland. Although it was more expensive (about $1000) it included 5 nights in a 4 star hotel, so perhaps about the same expense. They did have 3 patients per room; made our private rooms look more appealing. They only have to take blood thinners for one week (injections, mind you) and no aspirin follow up as opposed to our one month of Pradaxa and 6 months of baby aspirin. Interesting.
Kar
ales wrote:Congrats Kar. Great seeing you and everyone else starting to see results. I often speak with my wife of how fantastic everyone was at Tokuda and we both agree that our decision to go to Bulgaria was the right one for us. I have since my return booked a follow-up appointment at the Barrie Vascular clinic in late September with Dr. Sandy MacDonald and his team. I will have a doppler ultrasound to see how things are at that point. Hopefully all remains Status Quo. I have continued to see positive results and only hope this continues to be the case. I have attached a couple recent video clips, one which is my after video and the other a news interview. Be well.
