What's not being said?

[soapdiva884]

Well, my boyfriend had the procedure done twice by the good Dr. Sclafani and it did not work for him. It was so worth the try though! Wish it had been a better outcome for us I do believe that my boyfriend has gotten alot worse since the last CCSVI proc. But we would do it all over again just for the fact that we had hope for a short period of time.

[ozarkcanoer]

I used to post here on a regular basis starting in 2008. My husband and I are active supporters of the BNAC research, financially and otherwise. We still are. I had the CCSVI procedure performed last August (2010) and again March (2011) and am in the most unlucky situation of having occluded stents in both my IJVs. There is a psychology to these sorts of things. Since there is no treatment for my situation I have become very subdued. I did not go abroad. My IR for my procedure is considered to be one of the best in his field (another IR told me he is in the top 5). My most distressing symptoms, terrible pain, was releived by the procedure and I still feel better than before. I am just flummoxed and am trying to live from day-to-day with my decision to go with stents and the unfavorable outcome. I suppose I should post on the tracking sticky but my hesitation to do so is an example of a negative result dampening my enthusiasm. I can imagine others are in the same situation.

ozarkcanoer

[Cece]

Soapdiva, I have kept you and John in my thoughts.
It is good to hear from you even if it is not the good outcome you two deserved.

Ozarkcanoer, they are both blocked? I had thought it was just one.

It does illustrate the point that it might be easier to share good outcomes than negative ones.

Last summer there was talk about how people who had gotten the procedure were off living life and feeling great and that was why we didn't hear back from people after the procedure.

[dania]

I used to post here on a regular basis starting in 2008. My husband and I are active supporters of the BNAC research, financially and otherwise. We still are. I had the CCSVI procedure performed last August (2010) and again March (2011) and am in the most unlucky situation of having occluded stents in both my IJVs. There is a psychology to these sorts of things. Since there is no treatment for my situation I have become very subdued. I did not go abroad. My IR for my procedure is considered to be one of the best in his field (another IR told me he is in the top 5). My most distressing symptoms, terrible pain, was releived by the procedure and I still feel better than before. I am just flummoxed and am trying to live from day-to-day with my decision to go with stents and the unfavorable outcome. I suppose I should post on the tracking sticky but my hesitation to do so is an example of a negative result dampening my enthusiasm. I can imagine others are in the same situation.

ozarkcanoer

Sorry about your situation. I can empathize. My 1 stent is pinched and bent at 1 end. (who would of thought that was possible) And all 3 veins 100% blocked with scarring. Can you tell me what your stents are occluded with? I know someone whose stent got intimal hyperplasia. She had it treated but it returned but it is not blocking her vein completely and she is doing well so far. Says she is better than before she had anything done. She is now starting to walk.

[ozarkcanoer]

Cece,

Both of my IJV stents are blocked I knew about the first one in March when I had my second procedure. When the IR hit the blockage with his probe I could feel my shoulder and arm shake in response. This was my left IJV. He checked my right IJV and it was OK. In June I had an ultrasound by a professor of medicine at Washington University in St Louis and may heart sank when he told me that both stents are blocked. My stents are very high up near my ears. The IR said there was currently nothing to be done. I assume the twist in my azygous is OK since there is no stent there and most people with ballooned azygous remain open there.

ozarkcanoer

[ozarkcanoer]

dania,

I asked my IR what the blockage is and after pushing the question he answered, could be blood, scars or both. In any case he did say that whatever it is that it is so hard a diamond drill couldn't pierce it.

I am concerned that no one is researching how to fix these problems. My local IR told me that venous bypass is much harder to impossible than arterial bypass due to the nature of vein walls as opposed to arterial walls. So that is not an option today. He also told me that the area where my stents are is so high and is at a very complex area where any surgery would be extremely difficult. But both my IRs told me I have lots of collaterals so don't worry.

ozarkcanoer

[dania]

ozarkcanoer. We seem to be in the same boat. My stent is also high up. I was also told the same. There is a Dr Salvatore Spagnola in Monza Italy that has performed 2 vein bypasses with good results. One patient who was in a W/C was walking afterwards without any aids, not even holding on to a wall.
My collaterals are not doing the job.

[Johnson]

While not stellar, I have had results that last, and are marginally remarksble. I do not post about it because;

a) The vagaries of life permit me little time to read here, let alone write. It has been weeks without Interwbbiness access for me.

b) I think it is a constellation of afflictions, and I am methodically pursuing all and each. It is difficult to distinguish just what does what.

c) Of one thing I am certain; I have a greater speed of recovery (hours) to symptoms, rather than the usual weeks or months. I have had a lot of extreme stress lately, which left me barely able to stand, but 3 hours removed from the stimulus, I am more or less back to "normal".

d) Battle fatigue. It has been a whirl-wind couple of years...

Everyone has a story. This is the Naked City.