3 Months Post Lib. Proc. In Bulgaria. WAY MORE DISABLED

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

Postby dania » Thu Jul 29, 2010 4:38 pm

cheerleader wrote:is there are blood thinning regimen in Bulgaria? Coumadin, warfarin, heparin? What are they giving patients after to keep INR in range and stop clotting? The Stanford group was on plavix, aspirin and coumadin...and had to be monitored for pro thrombin time once home.
cheer

Yes absolutely. The give Heparin, asprin plus Pradaxa (More effiecent than Coumadin and no need for INR test). I have been taking Coumadin for 10 years due to 2 PE's as my blood has the Factor V Leiden and Protein C deficiency. My INR has always been around 2.7. I had discussed this with the doctors there and they said I could take my Coumadin when I returned home after the first procedure. With the second they reccommended that I stay on Pradaxa for 3 months.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Advertisement

Postby thornyrose76 » Thu Jul 29, 2010 6:05 pm

Cheers asking what I was wondering as I read the posts, what are the specifics for blood thinning with Bulgaria?
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Postby HappyPoet » Thu Jul 29, 2010 6:27 pm

Here are three possible explanations of why a procedure might have a poor outcome:

1. The patient was already on a trajectory heading into a true exacerbation, so the poor outcome was a matter of bad timing: If a patient has an active relapse history, then odds increase for a poor outcome.

2. The very act of the procedure itself caused either a new exacerbation or a pseudo-exacerbation (old symptoms flare): If a patient has a fragile/weak system from high stress, for example, then odds increase for a poor outcome.

3. The patient was either still recovering from an illness, pre-procedure or had recently become infected with an illness, post-procedure: If a patient's immune system has activity, then odds increase for a poor outcome.

So, you can bet I'll be praying that I won't be heading into a true attack, that I won't have a painfully twisted ankle, and that I don't catch some kind of germ while in the hospital!

Also, there is a one in six chance (16.67%) of being a patient who restenoses and has no benefit from the procedure: 50% restenose, 1/3 show no benefit

Example: 12 patients have procedure: 6 restenose (50%) of which 2 will show no benefit (one-third).

~HP
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Postby costumenastional » Fri Jul 30, 2010 12:06 am

cheerleader wrote:is there are blood thinning regimen in Bulgaria? Coumadin, warfarin, heparin? What are they giving patients after to keep INR in range and stop clotting? The Stanford group was on plavix, aspirin and coumadin...and had to be monitored for pro thrombin time once home.
cheer


Chris was treated in Tokuda by dr Petrov one day after i was. I was prescribed a 3 month regime of Plavix (which ended the day before yesterday) and a 6 month regime of Daflon and baby aspirin. Chris should have been advised to do the same cause if i remember correctly we both had only balloon dilatation. What Dania said sounds like the regimen for stents.
Chris is an extremely cool dude from the States with a wonderful family. I hope he wont mind me sharing on his behalf since typing gives him trouble.

I can also report that another patient who was treated with us is feeling bad as we speak. She was found to have severe stenoses in both jugulars and azygous all of which were corrected 3 months ago..

This is the mail they sent to her regarding follow up.
Your Out-Patient CCSVI Check-up Exam includes the full diagnostic testing and examinations to assess the results of your procedure and your current health status. The cost of the check-up package is approximately 600 Euro.

Travel & CCSVI Check-up Exam Itinerary
Day I: Travel- Arrival in Sofia and settling into Tokuda Hostel or local hotel
Day II: Out-Patient Check-up Exams- Echo Doppler diagnostics, clinical diagnostics, and consultation with angiologist phlebologist specialist.
Day III: Travel-Departure Back Home
In very rare cases and upon medical indications it may be necessary to perform the in-patient procedures and treatments again. In these rare cases, we offer reduced prices for the invasive venography and endovascular treatment in addition to the check-up exam charges as follows:
Invasive Venography- approximately 1,300 Euro
Invasive Venography + Endovascular Treatment- approximately 3,600 Euro


I am certain that at this point, most of us will need further assistance after the first procedure. Dania's post says it all.
As long as doctors keep treating us, their methods can only get better.

Chris, i am sorry. Hang in there brother. You are too cool to give up.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 3:00 pm
Location: Greece

Postby Blaze » Fri Jul 30, 2010 5:07 am

How horrible for you, Chris!

Thanks so much for being willing to share. All of this information can only help those of us who are still in our decision-making process.
User avatar
Blaze
Family Elder
 
Posts: 405
Joined: Sun Jun 27, 2010 2:00 pm

Postby nagsy » Fri Jul 30, 2010 6:57 am

costumenastional wrote:Chris was treated in Tokuda by dr Petrov one day after i was. I was prescribed a 3 month regime of Plavix (which ended the day before yesterday) and a 6 month regime of Daflon and baby aspirin. Chris should have been advised to do the same cause if i remember correctly we both had only balloon dilatation.


In Poland (Euromedic) patients who have ballooning ONLY are given heparin injections for 7 days and thats it. Why the big difference between different countrys in terms of post-op treatment. I wonder which approach is more effective at reducing clotting?
User avatar
nagsy
Family Member
 
Posts: 26
Joined: Thu Sep 24, 2009 2:00 pm

Postby whyRwehere » Fri Jul 30, 2010 1:14 pm

It's very sad news Chris. You must see someone near you to check on things like LR1234 did, and I hope they can solve the problem. It seems that Bulgaria is having a lot of difficulties, I wonder if they are taking notice.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 2:00 pm

Postby walcat » Fri Jul 30, 2010 1:48 pm

Chris, I'm so sorry to hear you are worst. Thank you for sharing with us! I'm on a waiting list, and I'm glad I'm going in not expecting miracles.
I've been looking for a doctor in my area since January. I'm on a waiting list for a doctor out of state, which is coming soon. I was able to find a local doctor to do my follow ups, he even knew the doctor who will be doing the procedure and was going to contact him.
I hope things turn around for you and you get to feeling better.
User avatar
walcat
Family Member
 
Posts: 25
Joined: Sat Dec 12, 2009 3:00 pm
Location: Idaho, USA

Postby colapesce » Fri Jul 30, 2010 2:31 pm

Chris, I'm devastated to hear this. It's so upsetting. I really hope you find someone who's able to give you some help, some answers soon.
User avatar
colapesce
Family Elder
 
Posts: 156
Joined: Thu Dec 10, 2009 3:00 pm
Location: London, UK

Re: 3 Months Post Lib. Proc. In Bulgaria. WAY MORE DISABLED

Postby malden » Sun Aug 01, 2010 1:15 pm

Chris1967 wrote:I am obligated to share this. Fact: I am so much more disabled since this operation the difference is unreal and very miserable. I am extremeley depressed. Way less function in hands, feet, shoulders ache, everything aches...type even less now. I do not come on here any more, it is very very depressing. My arms legs, fingers...everything is dramatically worse

You better be prepared for this possibility if you are going anywhere in the hopes of helping yourself. This had to have something to do with my rapid demise

Sincereley,
Chris


Chris, thank you for you honest report and advice to be prepared for possibility to be more disabled since this operation.

Best regards,

M.
malden
 

Postby Chris1967 » Sun Aug 01, 2010 9:03 pm

Hello everyone I just wanted to come on here real quick to thank everyone for their responses to my post.
I cant tell you all how much that means to me to read all these well-wishes.
And to my English Sister and my Greek Brother thank you so much and I wish you both the very best. I can't believe how wonderful the both of you were and what a pleasure it was to get to know both of you.

I can't respond right now to all the questions, the particulars, the medicines I'm taking, how I'm following up, what I'm doing about this, I just can't afford to let myself think, it drives me crazy, I can't stand the medical professions right now, the doctors, the hospitals, the medications. the whole desperation thing makes me so much more sick. What Spiros says is acurate regarding my experience, medical procedure and medications. Some one asked about neck pain; yes, I had it show up two weeks or maybe three after the operation. It sucked to look to the left.
What can I say people. I just hope I get the toughness back to fight this. I hope I can start to follow up with this. My GP, Neuro, Cardio (acquaintence) vascular guy. they all seems so encredibly jaded by the pill for everything, status quo routine of health care. I hate it. theyre all fucked. This sytem needs a complete overhaul so we can put the damn CARE back in health care.
Dont get me started... Night All
Chris

My wife and I just read all the responses. I called her in to read them, she needed to to see how good people are tonight before bed. This is very tough on me physically and mentally but it is so tough on my wife I love her so much and I see this tearing her up. If only we could have hope, just an ounce of hope. I just wanted to say thank you. Spiros you always have a place here friend. Say hello to your Mother and Give Greece a kiss for me, I miss her!
User avatar
Chris1967
Family Member
 
Posts: 55
Joined: Mon Dec 21, 2009 3:00 pm

Postby costumenastional » Sun Aug 01, 2010 9:54 pm

Will do brother.
You don't deserve this. None of us does. Whatever you do, keep the faith.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 3:00 pm
Location: Greece

Postby Chris1967 » Mon Aug 02, 2010 7:48 am

Trine wrote:Did you have any improvement initially or was it downhill from the start?

I had some improvements in circulation as my feet were warmer. I think the results to this point have been either I have restenosed or the surgery itself was harmful. I wont know the answer to this Im afraid. I have asked my family doctor to refer me to an interventional radiologist. I assume this is the correct medical direction I should head in? If anyone knows what I should ask my family doctor (GP) let me know please.
I was in to see him two months ago as I was feeling very weak and had all kinds of new spasms and new body parts hurting, he asked me to write a cover letter to an IR or who ever. He such a nice guy, he realy is, but how worthless is this shit. Patient in patient out, patient in, patient out. hurry hurry hurry. Have to see as many as possilbe. Not becouse I have to, because it pays to. Sure my good doctor friend, and say hello to my awsome blue cross blue shield insurance with your several hundered dollar bill. For asking me to write a cover letter! you suck! Ive got to tell my wife he doesnt walk on water. I hate that she thinks so.
Two months later, here I am leaving his nurse a message explaining I dont write cover letters. It took me that long to snap out of this depression long enough to be the squeeky wheel. Heres a guy who closes his office at 4pm Monday thru Thursday and noon on Friday so he can get an early start on the weekend. Im so fucking fed up! He wants me to write a cover letter! And my body is ceasing up. I think Ive done my part in the taking initiative department. I went to Bulgaria!!

Trine wrote:Have you had a check up of your veins to see if maybe you've re-stenosed? Maybe they didn't check something and missed your problem?

I'm so sorry to hear your situation and hope you get some real answers soon.


No. I went to my very busy GP with concerns and hopes of him getting on board and considering my treatment in Bulgaria then maybe sending me to a specialist for investigation. He asked me to go find some help some where and write a cover letter to some one.
Ill let you all know step by step how this plays out. Just left my message with the one who takes messages at my GP's private office in his rental building that my insurance is paying for. I cant believe how put out she sounds in anwering the phone. I am disgusted at how stupid these people think their patients/customers are.

Thanks all for your kind gestures and concern. hang in there with me while I get hold of myself too. appreciate it.

Chris
User avatar
Chris1967
Family Member
 
Posts: 55
Joined: Mon Dec 21, 2009 3:00 pm

Postby vivavie » Mon Aug 02, 2010 8:34 am

Chris I do know how you feel! Same here! I was half liberated (azygos was not treated- stent left jug) in Poland in April. No WOW liberation for me. The first month I felt awful (jello brain), no changed in main symptoms (PAIN-fatigue-brain fog) after 6 weeks the small improvements (bladder-bowel-sleep-saliva) were gone. Now it is a slow decrease with new symptoms...

I keep knocking on doors, try making contacts, try to stay inform but all that takes ENERGY which I don't even have for the day to day chores of life!!!!

I probably have a clotted stent, if not attend to it may be too late! I am soooo FRUSTRATED, angry and i am getting depressed... This is way too hard... I am alone in this. It takes hours to write up letters and then tire for the rest of the day... But people without this condition don't understand all it takes out of us to put things together...

I am feeling defeated

sorry, this is your tread and you should be getting support
User avatar
vivavie
Family Elder
 
Posts: 171
Joined: Wed May 05, 2010 2:00 pm
Location: QC, Canada

Postby Chris1967 » Mon Aug 02, 2010 11:30 am

vivavie wrote:
I am soooo FRUSTRATED, angry and i am getting depressed... This is way too hard... I am alone in this. It takes hours to write up letters and then tire for the rest of the day... But people without this condition don't understand all it takes out of us to put things together...

I am feeling defeated

sorry, this is your tread and you should be getting support


You are not alone in this Vivavie. Keep doing what you can on a daily or even weekly basis. Don't try to do too much .

Be patient with the ones closest to you. If your like me you can forget to do this when your constantly dealing with painful stuff and then new painful stuff. I know the routine all too well.

If you have a spouse, parents, children, they know what you're going through (in so far as the pain they see on your face). Be patient with them. It's difficult to put into words how to console someone suffering like we are. I see how frustrated you are, me too. I experience the same frustration day in and day out.

I want you to know I'm thinking about you and that you've made me realize that I am spending too much time wallowing in it. I should be stronger for everyone who suffers like I do. You might have drawn on my strength not my frustration. My apologies.

My wife is so incredible I can't begin to express how grateful I am that God has put someone this soft and this sweet in my life. And no worries about sharing your frustrations with us in this thread I appreciate that very much and I hope that you find some comfort in knowing that you're not the only one frustrated. Like I said, I'm thinking about you and I know better things are right around the corner for us. Who knows, we may wake up in the morning to find CNN announcing the cure for this disease!

Also, if you need to bitch about stuff, I can be all ears too. No worries.

In the mean time, does anyone here want to suggest what in the world I should be telling or asking my GP? His office just called my wife, my wife just called me and I had to tell her to wait until I find out on here who it is I need our GP to refer me to. Is it an interventional radiologist? I am not an avid study of all things MS or CCSVI like most on here. Im just starting to get my feet under me, so to speak, and shake some of this depression and try and help my self if I can.

~Chris
User avatar
Chris1967
Family Member
 
Posts: 55
Joined: Mon Dec 21, 2009 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service