Returned from Bulgaria

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Returned from Bulgaria

Postby Justliberated » Mon Jun 07, 2010 12:11 pm

I have PPMS and have just returned from Bulgaria and wished to share some of my experiences and expanded knowledge on liberation. To anybody thinking of going to Bulgaria, I want to put their mind at ease with my experiences. I also want to praise Grozdinski’s department to whom I feel a great personal debt.

Firstly, Prof Grozdinski and Dr Petrov’s team are excellent and second to none. Professional, knowledgeable and put you at your ease immediately. The hospital in Sofia is clean, modern and well equipped.

Secondly, the team there communicated to me that the question of whether to stent or to balloon purely depends on the type of stenosis. If angioplasty is sufficient for the type of stenosis following the correct application, Dr Petrov believes that re-stenosis should not occur. The question of whether to stent purely depends upon the type of stenosis and not the permanency of the treatment. The correct aftercare medication is also another important factor in preventing re-stenosis.
Grozdinski’s team are keen to communicate to all potential patients that they are highly skilled, well equipped in Bulgaria and open for business.

By the way, I was scanned in the UK in February and told that I had nothing wrong with my veins. Grozdinski found this to be untrue within a few minutes of a Doppler. This was confirmed within the first few minutes of a venogram. In fact, I had 50 - 70% stenosis in my right jugular and azygous.

Immediately following treatment, my head was clear of the fog which had plagued me for around 2 years and my fatigue was immediately considerably better and is improving by the day. My left leg is also considerably stronger a few days of the procedure. My walking is now almost perfect!
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Postby mshusband » Mon Jun 07, 2010 1:10 pm

Good on you JustLiberated ...

Can you do a tracking thread at the top? Keep it up to date please. Those stories really help people with what seems to be delays and waiting ...

Did you get stents (can't remember if they do those in Bulgaria or not) ... and what is your follow-up plan?
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Postby magoo » Mon Jun 07, 2010 1:38 pm

Wondeful news! Thanks for the update!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby blossom » Mon Jun 07, 2010 2:10 pm

hi just liberated, so glad you are doing so well. thank you for shareing your experience. i have ppms also for nearly 20 yrs. would you mind telling how old you are and how long you have had it? also when they tested you in the uk what type of testing did they do? i am more concerned about the testing properly because if they miss one little thing that could make all the difference. also, did you happen to have any injuries or trauma of the neck, head or shoulder area in the yrs. prior to your diagnosis? also, you mentioned that the doctor said it was important to have the right medication after treatment to help prevent restenosis. can you give that information. thanks again for telling your story and we hope to hear more and more positive things happening for you.
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Postby ales » Tue Jun 08, 2010 7:39 am

That is truly fantastic news. I have SPMS and have been dx for 18 years. I am scheduled for Bulgaria July 21st so that is very calming and amazing news. I wish you continue positive progress and welcome your updates.
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Postby TMrox » Tue Jun 08, 2010 7:49 am

Great news Justliberated,

were you told to have regular check ups (venography or doppler) after the angioplasty?

Can you share with us where were you tested in the UK back in February? Was is in the NHS or in a private hospital?
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Postby Justliberated » Tue Jun 08, 2010 1:14 pm

Dear all,

I did not get stents. My question to the Dr's there about whether to stent or angio gave me the info that,'If applied properly re-stenosis is not inevitable with angioplasty, it depends on the type of stenosis.'

I am 36, diagnosed 2 years ago, but can remember minor symptoms for 10 years or so. No neck trauma, although my diagnosis followed a year of extreme stress.

My medication is Pradaxa, Deflon and Aspirin. I return in six months for a doppler and further treatment if required.

Just.
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Postby blossom » Tue Jun 08, 2010 2:12 pm

thank you just liberated. wishing you the very best.
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Postby burg » Wed Jun 09, 2010 6:01 am

Got discharged from Tokuda Hospital today...Wednesday at 11:00AM. At Greenville Hotel..going home tomorrow morning with my wife to NYC, USA.

I met AnnaP, and her wonderful husband, and many other outstanding people.

As AnnaP said, Doctors and staff are great. Hospital is pretty new, so all equipment is pretty much, the latest technology.

I had a moderate stenosis in the left jug..severe stenosis in the right jug. azygos was nothing remarkable. Dr Petrov ballooned and cleared both Jugs. It feels like a really bad earache, then when he goes higher, pain goes there. As soon as he deflates, pain subsides. When you know he's accomplishing the mission though, you feel the temporary pain is worth it.
Actually, the way people on this thread act, I feel a particular closeness with all of you..so as far as the discomfort, I guess I took one for the team!

My proceedure began at 6:30 PM, on Monday evening, June 7. Was supposed to be Tuesday morning, but the night before was great as far as I was concerned. Start to end..about 1 hour 20 minutes. 4 nurses and 2 doctors in op room. Now you know why they charge what they charge.

My hospital room was equipped with 2 beds, which my wife was able to use one. A couch, table, even a small fridge and range. I was able to get this all handled by the floor nurse, who was amazing! I asked upon arrival for plenty of fruits and vegetables, and all I had to do was ask. I had a separate fresh fruit basket, bananas,apples,oranges, and a fresh vegetable basket, whole tomatos, cucumbers,etc. At first, I asked my wife where she got them, and it turned out the nurses had the kitchen put it together.

Nothing on TV for English speakers except for BBC. Canadians...you guys are ok...lots of French TV. Computer works great with high speed access. Plenty of great Canadian patients. I was the only American. I don't understand why Americans aren't flocking to get the procedure. There seems to be more of a united front by Canadians to get liberated.

Now the most important part. I have SPMS, diagnosed in 2001, but had Lyme Disease that had to be treated first, with a 1 year IV antibiotic regimen. I am a cane walker, getting much relief as of late from a wheelchair. Started on Avonex, then Tysabri, then Rituximab. No help at all from anything. Just getting worse.

Not a lot of change, but anything is something. The evening right after the procedure, I felt a little more warmth in my usually icy right foot and leg.
My usually annoying bladder has become more than bearable. Slept through the night...no annoying wake ups, deciding to take the walk and get relief, then walk back and try to fall asleep again. Daytime better also.
My wife says my face is pinker, instead of white/pale.
Also, whenever I would stand from a lying down prone position, or a sitting position, I would stand and stretch my body, arms and legs. Not any more.

Personally, I felt before going in; I'll be happy where I am...as long as i stay where I am, I'm good. In Las Vegas, a "push" is a win! So in essence, the little changes I've had are great. Anything positive is a win!

AnnaP...great meeting you and Tony! and remember...

Even if we trip...let's trip forward!!
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Postby Rokkit » Wed Jun 09, 2010 8:50 am

burg wrote:Also, whenever I would stand from a lying down prone position, or a sitting position, I would stand and stretch my body, arms and legs. Not any more.

This is a symptom I started having much more trouble with a few months after treatment and the problem remains. I would appreciate if you would update on if your improvement remains in the coming months. PM is fine if you prefer. Thanks!
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