Our trip to the local vascular neuroradiolgist

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

Postby Johnson » Thu Apr 29, 2010 2:58 pm

hoodyup wrote:
Donnchadh wrote:
I showed the IR Dr. Simka's answer to the stent migration issue


What IS Dr. Simka's answer to the stent migration issue?

A


My understanding is that they use an "over-sized" stent, which essentially jams it in. I think of a hose connection. I wonder though, if that can lead to other issues like turbulence, or with the edges of the stent I'm starting to feel like I don't care anymore. I'd rather have a few years of feeling good and pop off "naturally" than face years of increasing hell. I'm checking my tool box right now for hose connections. DIM(yself).

Edit - Thanks Happy Dance, for the link below. My explanation was rather crude.

A - for goodness sake, don't tell Boopie what I wrote. I am a brain-dead pragmatist completely lacking in tact, and in this case, fact.
Last edited by Johnson on Thu Apr 29, 2010 3:26 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Postby happydance » Thu Apr 29, 2010 3:05 pm

Here is Dr Simka's response to the Alberta Primetime debate which discusses stents:

http://for-greet.squarespace.com/journal/2010/4/18/ccsvi-debate-on-alberta-primetime-simkas-response.html
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Postby hoodyup » Thu Apr 29, 2010 3:10 pm

Johnson wrote: "over-sized" stent....jams it in


Oooh. That sounds like some thing Boop would be pretty squeamish about. Depends on location, though. She's heard about the accessory nerve damage with some of Dake's first, bigger stents. If it were me I think I would risk it, too. I can't see existing in her current configuration being much fun. Once they are integrated into your endothelium they aren't likely to migrate. It's easy for me to make decisions for others, though, but if it were me I'd probably be sweating over it, too.
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Postby elyse_peace » Thu Apr 29, 2010 9:06 pm

Hoody -
Thank you for your kind words of support. :D I'm sorry/glad to find you here in the struggle. :D And, damn, it's hard!
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Postby hoodyup » Wed May 19, 2010 12:37 pm

This is not an happy post (sorry guys). Yesterday Sharon and I went for her 2nd venogram/angio. The process, as difficult as it is, is getting easier. The Hoyer lift really helps in getting her transferred and not landing on the floor. We shelled out the $300 for a medical transport and she was on the operating table all prepped, IV'd and ready for liberation part 2. Then the nurse noticed an irregular heart rhythm (PVC's). They pulled the plug on the venogram and sent us home to ponder what is causing her irregular heart rhythm. "I'm a vein guy, not a cardiologist..." Etc, etc. So we are left with another bladder infection and no answers, no referrals. NADA. I understand that he couldn't do the procedure if the heartbeat was irregular for fear of her going into tachycardia or some other heart failure. She has had an irregular heartbeat for a while, they didn't notice it last time around or it wasn't as pronounced.

Anyone have any ideas on what causes/fixes PCV's? Bladder infection?

We are going to find a cardiologist and start the whole process from before square one. I am so disappointed I could just give up. Sharon, even more so. This just isn't fair for her to have gone through all this only to be told "no". Maybe we shouldn't have given up our spot at the Stanford trial. Our vascular guy kind of skirted my questions about her azygos vein, which leads me to believe that he didn't thoroughly investigate it last time. I stressed the importance of it to him before this procedure, and he seemed to be willing to really take a closer look. However, now, I don't know if we are ever going to be candidates for this.

So it goes.

Andrew
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Postby pegmegrund » Wed May 19, 2010 3:36 pm

Andrew-

I'm so sorry to hear about what happened. How disappointing.

I have PVCs and PACs. I get a 'fluttery' feeling in my chest at times, and it feels like my heart has skipped a beat. I had several tests, and wore a Holter monitor for 24 hours. There was no 'cause' determined for me. I was told to stop drinking coffee (not going to happen). The PVCs also seem to occur more when I'm stressed. This was about 5 years ago when I did the tests. It hasn't gotten better or worse... just still fluttery at times.

It is certainly something to have checked out, as it can be indicative of other heart issues... but PVCs are also common in people with normal, healthy hearts...

Good luck, and know that there are many of us here supporting you, thinking of you, and hoping for a good outcome for you and your wife.

Pam

PS - I posed a question on Dr. Sclafani's thread, as I'm now curious if PVCs/PACs in general mean that venography is ruled out...
Last edited by pegmegrund on Wed May 19, 2010 3:54 pm, edited 1 time in total.
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Postby ndwannabe » Wed May 19, 2010 3:41 pm

Oh Andrew! I can only imagine your disappointment. With all you go through to get to and fro...

But you know what? You go and find that cardiologist (or better yet, look for a CardioVASCULAR specialist) and this time I bet it will work out.

Third time is a charm as they say and I am hoping it will be for you guys too!

Hugs to both of you!
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Postby elyse_peace » Thu May 20, 2010 2:13 pm

Andrew and Sharon,
My heart fell as I read of your latest difficulty. I can't even imagine how you feel. :(
I ask any powers-that-be to come to your aid.
"They" say, there are no accidents. Who knows why things are working out this way right now?
Please don't give up. I am so hopeful that success is not far off.
Best to you. May you recover from this better than you expect.
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Postby bluesky63 » Fri May 21, 2010 6:08 am

I think your guy could have been overreacting. But I wasn't there. I have had a variety of cardiac arrhythmias over the years, and I think, for god's sake, you would cancel a procedure for a few PVCs/PACs? Which certainly could have been from an infection.

However . . . yes, they should technically be checked out, but they are often "normal" for many people. But from his point of view, suppose she did end up having a cardiac event -- someone would have said he should have been alerted by the PVCs. I can't blame him for being cautious in someone who doesn't have a known history or official clearance.

(Couldn't he tell whether they were PVCs or PACs from looking at the strip?)

It's not the end of the world at all, just a tedious detour. To follow the book, she should probably have a holter monitor so someone can look at the strip and say that her 24-hour function is going to be sufficient for a venogram. Any doctor can order this.

Like I said, tedious, but not a roadblock.

Don't give up now!!!!!

P.S. Peg, just saw your post -- obviously I'm not a doctor, but I've been engrossed in arrhythmia for about ten years now. If you've had monitoring you should know whether you have PVCs or PACs, and you should know if your issue is something that is normal for you, as it is for many people.

Most of the time these issues just need to be "known and noted" before procedures so there are no surprises. I have had a variety of procedures with a variety of arrythmias, and I cannot imagine that either PVCs or PACs would be an issue unless they were associated with some sort of malignant ventricular arrhythmia. But Dr. Sclafani is the one with the field experience! Best wishes to you. :-)
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Postby costumenastional » Fri May 21, 2010 6:32 am

For what it s worth, while i was in Sofia they found a severe heart problem in a fellow ms patient pre op while they were giving him the routine heart doppler. One of two valves was missing. All they did was to inform him for a problem that he didnt have a clue about, that if his other valve fails he will dye and then they took him in the operation room where they placed stents in him.
I want to believe that your problems are nothing compared to this and that you will overcome these obstacles soon enough.
Chean up. It will be ok.
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Postby hoodyup » Fri May 21, 2010 1:17 pm

Thanks guys. I believe our doc is being a bit conservative with Boop because he is afraid of anything going wrong and it coming back on him. It was indeed frustrating and heartbreaking, but we will go on. What else can we do? We will see a local cardiologist and hopefully get "signed off" and back in soon. She is on antibiotics for the bladder infection. I think next time we may skip the catheter and they will just have to deal with diapers and bedpans.

Thanks for the reassurances-- we need them about now. I wish we lived in NY, I think Dr Sclafani is doing a superb job treating patients and honing his skills. Our guy seems to be a little old school and not ready to try anything like stents, even if restenosis keeps occurring.

Meanwhile job stress, home stress and life in general is kind of getting me down. :( I still enjoy reading about other people's good results, it keeps me going. :)

Andrew
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Postby walcat » Sat May 22, 2010 9:17 am

Andrew and Sharon - I'm so sorry about what you went through, and it isn't fair to be told no. I'm getting so tired of all the NO's (I also get down), but I do believe that this will work out for you and everyone else looking for help. Thank you for all your posts, it helps me gain knowledge. :)
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Postby pegmegrund » Sat May 22, 2010 10:29 pm

bluesky63 wrote:P.S. Peg, just saw your post -- obviously I'm not a doctor, but I've been engrossed in arrhythmia for about ten years now. If you've had monitoring you should know whether you have PVCs or PACs, and you should know if your issue is something that is normal for you, as it is for many people.

Most of the time these issues just need to be "known and noted" before procedures so there are no surprises. I have had a variety of procedures with a variety of arrythmias, and I cannot imagine that either PVCs or PACs would be an issue unless they were associated with some sort of malignant ventricular arrhythmia. But Dr. Sclafani is the one with the field experience! Best wishes to you. :-)


Hi Bluesky-
I have both PVCs and PACs, and everything else checked out fine, so I think I am one of those people where this is just my 'normal' - my heart checked out OK, blood pressure OK, etc.

Here is the response from Dr. Sclafani, copied here from his thread:

drsclafani wrote:
pegmegrund wrote:Hi Dr. Sclafani,

Thank you for this thread. I'm glad you're here answering our questions.

My question is: I have premature ventricular contractions (PVCs) and PACs and had them checked out about 5 years ago. I wore a holter monitor for 24 hours. My heart checks out fine. My blood pressure is normal. I was told to stop caffeine... (didn't happen) and I also notice that these 'flutters' happen more when I'm stressed.

Does the existence of this type of irregular heartbeat in an otherwise health heart affect my ability to have catheter venography to treat CCSVI?

Thanks!
Pam


AS the catheter goes through the heart, it is possible that the guidewire or the catheter can "tickle" the right atrium and this can result in some irregular heart beats that usually stop immediately after the wire and catheter exit the heart on the way to the jugular and azygous veins.

Given that you are prone to irregular heart beats as PVCs or PACs, i would think that the procedure might be more risky. However i would think that having a cardiologist on standby to address such situations would be prudent. I would not consider it an absolute contraindication to the procedure



Andrew - again, so sorry that your wife wasn't able to have the procedure, but it sounds like there is some risk, and it is better to have it checked out. Please keep us posted on the appt with the cardio doc.

Pam
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Postby hoodyup » Sun May 23, 2010 10:11 am

pegmegrund wrote:
bluesky63 wrote:P.S. Peg, just saw your post -- obviously I'm not a doctor, but I've been engrossed in arrhythmia for about ten years now. If you've had monitoring you should know whether you have PVCs or PACs, and you should know if your issue is something that is normal for you, as it is for many people.

Most of the time these issues just need to be "known and noted" before procedures so there are no surprises. I have had a variety of procedures with a variety of arrythmias, and I cannot imagine that either PVCs or PACs would be an issue unless they were associated with some sort of malignant ventricular arrhythmia. But Dr. Sclafani is the one with the field experience! Best wishes to you. :-)


Hi Bluesky-
I have both PVCs and PACs, and everything else checked out fine, so I think I am one of those people where this is just my 'normal' - my heart checked out OK, blood pressure OK, etc.

Here is the response from Dr. Sclafani, copied here from his thread:

drsclafani wrote:
pegmegrund wrote:Hi Dr. Sclafani,

Thank you for this thread. I'm glad you're here answering our questions.

My question is: I have premature ventricular contractions (PVCs) and PACs and had them checked out about 5 years ago. I wore a holter monitor for 24 hours. My heart checks out fine. My blood pressure is normal. I was told to stop caffeine... (didn't happen) and I also notice that these 'flutters' happen more when I'm stressed.

Does the existence of this type of irregular heartbeat in an otherwise health heart affect my ability to have catheter venography to treat CCSVI?

Thanks!
Pam


AS the catheter goes through the heart, it is possible that the guidewire or the catheter can "tickle" the right atrium and this can result in some irregular heart beats that usually stop immediately after the wire and catheter exit the heart on the way to the jugular and azygous veins.

Given that you are prone to irregular heart beats as PVCs or PACs, i would think that the procedure might be more risky. However i would think that having a cardiologist on standby to address such situations would be prudent. I would not consider it an absolute contraindication to the procedure



Andrew - again, so sorry that your wife wasn't able to have the procedure, but it sounds like there is some risk, and it is better to have it checked out. Please keep us posted on the appt with the cardio doc.

Pam


Thanks for posting this, Pam I was waiting to hear what Dr Sclafani would say. Our guy kind of said the same thing. "I create PVC's when going through the ventricle." He is just being cautious, which is good. "I don't do death" he said. We still need to get in to see a cardio locally. I have a feeling her heart will prove to be healthy enough, she hasn't any heart related symptoms. From what I have been able to research PVC's are fairly common and often benign. Let's just hope this is the case. Thanks, again.
Andrew
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Postby hoodyup » Thu Sep 02, 2010 1:08 pm

Dear TIMS members:

It has been almost a year since I read about CCSVI on this website. In that time, Boopie has gone from having the no hope for stopping her progression to slight hope with reservations to brief joy at short term results and back to zero hope.

Let me explain. She was scanned for CCSVI in March with Doppler and MRV. Stenosis was found in the right IJV and venoplasty was performed in April. She experienced some short term improvements which disappeared after 1 week. It has taken us until Sept. 1 to get her back in for re-evaluation. We we certain that she re-stenosed, however, the IR performed another catheter venogram and didn’t detect any stenosis or lack of flow in the IJVs or the azygos. He even used a different probe for the azygos which he said allowed him to get into the curvy part. She was put under heavy sedation for the procedure and feels terrible today. The fact that he found nothing to angio makes me feel terrible. Worse than terrible, because this was the only thing we had to pin any hope on. It was logical and made sense. Now, nothing does.

I have a CD of this procedure and of the last one. I would like to email it to Dr Sclafani, but don’t know where to send it or how to do it in a PM. I don’t know if anyone can really say for certain what is going on with Sharon. I just know that since the relapse she is much worse than before. She can no longer stand at all. Her cognitive abilities come and go. She is angry at me most of the time. When she is not angry she is crying. If neither of those, then she is playing Farmville 24/7. I think she gave up a long time ago. Now that we were shot down at the IR, I don’t know what to do, what to obsess over, what to pursue. She doesn’t need to chase after every new fad or idea in the MS world, we have been down that road. But one thing is certain, if we do nothing, she will only get worse. We’ve tried that, too. So my friends, life goes on, however briefly. Just make sure you are all appreciating every day you have with your loved ones. Thanks for all your support over the past year.

Andrew
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