My second trip to Poland

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

Postby japentz » Sun May 09, 2010 12:06 pm

Hello and respectfully,

I am someone who just saw the doctors at Georgetown. I was not favorable toward stenting, at least not at this point. However, after it is properly tested and studied, it may prove to be an option.

Dr. Zamboni simply redid the angioplasty procedure. At this juncture he is not in favor of stents. The veins are something like elastic, you stretch them out a few times and then they stay open. The procedure has to be repeated several times, but eventually it works. That is how Zamboni has proceeded with this.

Georgetown is doing solely Angioplasty at this point, and will repeat this should the veins restenosis. At this point they are not stenting which i am cool with.

However, I was advised at Georgetown by Dr. Lee to keep an open mind regarding stenting as we are at the very beginning of properly treating MS as a vascular condition and we do not know what will be developed.

Someone I know had Liberation and stenting in Connecticut due to a special exception the vein would not stay open. However, she did not take it easy, was testing the limits of what she could do, jumping around even and within a week the stent slipped and her veins closed up again. They had to go in again and redo the operation.

I really think for those who are getting stents, they need to take it easy and not over do it. Stents really CAN slip.

For myself, dependent on what they find, I will be going to route of Angio plasty only. If in the future a protocol for stent use is thoroughly developed, I would consider them.

please be careful :) I know we all believe in this and want so much to get better. If liberated, lets take baby steps and prove the efficacy of this . . that way we don't give fuel to the adversaries of CCSVI to blast their propaganda.
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Postby SandyK » Tue May 25, 2010 9:49 pm

Did I overlook her update?
Diagnosed 1994, Self EDSS is 6.5
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Postby Brynn » Wed May 26, 2010 10:35 am

Sorry for taking so long, I was taking a bit of a break. My procedure on May 13 went great, just real easy like my trip in January. My Doppler revealed that my left IJV had indeed collapsed again, so this time they placed a stent on that side, too. He also ballooned my azygous vein, which I don’t think they did last time. The surgeon at Euromedic is no longer Dr Ludyga, as he is now working out of the new clinic in Warsaw. I did not get the surgeon’s name although I remember seeing him there on my last trip. They did six procedures on that day, with people from the US, Canada, France, Holland and the UK. Most of them received one stent and one woman who is virtually symptom free, received ballooning only. None of them seemed to have discomfort from their sessions and all seemed quite satisfied with their experience. I did find it interesting that none of the five were TIMS members. This tells me that we only really get a partial picture of the true numbers involved with all of this, since there is no central clearing point for tracking all of this. I do know that the number on my CD of my procedure is the order of patients treated. I was patient number 432 for this year.
I will say that my improvements have not been as dramatic this time, as in my first, but I do think they will come. When I lost my improvements at the start of March, I was really immobile for those two months, so I know I have more to rebuild. The fatigue is gone again and that has allowed me to begin riding a recumbent stationary bike. I also went and got an inversion bench which lays you upside down by your ankles. The bench has done a great job of stretching my body out to relieve the stiffness and stretching out my right shoulder, that has been difficult to use. I am also making progress on the bike, so I am getting stronger at supporting myself. So, I am going to work hard at the rehab and see how it goes. My voice is improving and breathing always stayed better. What I look forward to in the next few months is regaining my hand coordination and walking with greater ease with my walker. I was able to sit up in bed this morning with no assistance for the first time in weeks, so one step at a time!
My only editorial comment about stenting is that I am so glad I had an opportunity to have these procedures done. It is a personal decision for each of us to make. I felt much better when Dr Sclafani mentioned that the stent is pretty well covered after a month. I would say that the skill of the surgery team to choose proper placement, positioning and size is KEY. I also noticed the comment by Dr Dake who said that stents have been used in veins for decades, but that that has always been an off label use of that stent, since the FDA approval of stents are for arteries. I understood him to say that development of a specific stent for veins will require it’s own clinical trial for FDA approval, in addition to the clinical trials required to perform the CCSVI procedure itself. To me, that means YEARS away and I am not willing to lay in a bed and wait while my little boy grows up without my involvement.
I will let you all know how things are going after a bit. Take care everyone, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby SandyK » Wed May 26, 2010 10:41 am

Thank you Brynn. Your updates help a lot!
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Postby Jaguar » Wed May 26, 2010 11:01 am

Brynn

I am going back to Poland in October. I have already 1 stent on left and ballooning on right. What would you guess would happen if, at the check-up, the ballooned vein was found to have collapsed? Would I be given a stent immediately? Told to come back yet again?

Thanks for your educated guess

Paul
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Postby sunlounger » Wed May 26, 2010 12:42 pm

Hi Brynn,

Glad to hear everything went well I think the Dr doing the procedure is Dr Marek Kazibudzki,
I hope those improvements come back soon :D

Please keep us posted
You might find that you’re not lost
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Postby Brynn » Wed May 26, 2010 5:18 pm

Hi Paul, I told the doctor's that I can't afford the trip again, so if it seemed at all reasonable, to please give me a stent. I got my stent. I am sure you would, too.

Thanks, Sunlounger. How are you feeling?
41 years old, dx 1998, current EDSS 6.5
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Postby Jaguar » Wed May 26, 2010 5:40 pm

Ha ha

Please sir, may I have stent?

Thanks Brynn
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Postby Katie41 » Wed May 26, 2010 6:21 pm

Oh, Brynn, I'm so happy for you that you were able to return to Poland and get the stent. Things should be improving more and more. Can't wait for your next update!
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Postby SandyK » Tue Jun 15, 2010 3:06 pm

How are you feeling? The heat is getting closer. I know personally I am treading summer coming.
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Postby Brynn » Mon Jul 12, 2010 7:34 pm

Sorry to be off the radar for so long. It has been a tough time for me for several weeks. I have improved coloring in my feet and do not have fatigue but have had four UTIs since mid-march. I am having a hard time talking, can't support myself and can only type for short periods of time, with only my left hand. I am not seeing all of those great improvements that I had for 6 weeks in February. I had blood work done last week because I had a low grade fever right through the antibiotics for my UTI...hoping they might find some problem, but no, all normal. So, in a sense, I am fine but very low emotionally and physically right now. I am meeting a doc on Thursday to look into Lyme......
41 years old, dx 1998, current EDSS 6.5
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Postby ozarkcanoer » Mon Jul 12, 2010 7:46 pm

Brynn,

I am so sorry for all your problems. Are any of them due to MS ? Your voice and your right hand is that an MS problem and new or old ? I am surprised they are looking at Lyme disease so the doctors must not think your problems are MS related. Please know we are thinking about you and when you feel up to it give us an update. We have followed your story so long and we care.

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Postby prairiegirl » Mon Jul 12, 2010 8:02 pm

ozarkcanoer wrote:Brynn,

We have followed your story so long and we care.

ozarkcanoer



Ditto. Take care, Brynn-- hope things turn around for you soon!
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Postby Katie41 » Mon Jul 12, 2010 11:53 pm

Oh Brynn, I'm so sorry. Although your blood test didn't show any infection, perhaps you have a very low grade infection or inflammation that isn't showing up in the blood test (as witnessed by your low grade temp). I've had a very low grade kidney infection and then inflammation from a stuck gallbladder stone. Tthe occassional kidney problem has existed for a year or so from the valve not closing all the way between the uteter and kidney. The gallbladder stone has significantly shrunk from alternative things I've done. Once the inflammations cleared up I regained anything lost. I then figured out that for me there was a connection to the inflammations/infections and worsening or improving MS symptoms.

I've also begun Cheers endothelial health program. That probably helped with the inflammation since a couple of the supplements have vit C in them.

My thoughts are with you!
Katie
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Postby sunlounger » Tue Jul 13, 2010 1:23 am

Hi Brynn,

sorry to hear your having such a rough time of it :(
have you had a doppler to check jugulars since your last visit to Poland ?

my friend had one jugular completely block after just baloon angioplasty and hear its more common with stents
they felt a slight constant pain on the side it happened which made them go for check up

please let us know what your doc says about Lyme

hope this all works out for you soon
You might find that you’re not lost
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