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Thank you Cece,
Well I had the second procedure done this past week.
My RJV which was originally 60 -70% blocked is now unable to be opened.
My LJV was still normal and they were able to open and get more blood flow
In the Azagos.
No immediate relief.
I feel as though I continue to get worse.
I am told that I would be candidate for a bypass in the RJV when it becomes
available, however if there is no relief from the Azagos should I continue down this path.
I really want this to work and will give it more time to see if any improvements occur.

i feel so sorry this is happening to you. i know you said that you are a canidate for surgery when it becomes available. do they have any idea if it is due to intimal hyperplasia or clot or both. i feel confused and when we all started this it didn't seem confuseing at all.

it's strange and scarey that other clot problems people have doctors treat with thinners that work. but, it seems for those treated for ccsvi the clotting is hard to deal with.

i hope you start feeling and getting better.

Jdoyen, I hope you see some improvements too. You still have collaterals on the right side, so that is still helping. Your left can take more blood down to the heart, and perhaps the Azygos will show benefit.

You just had it done, take time to heal. My doctor said he never counts the "On the table improvements." He says it takes time. Veins just got stretched, they need to heal.

I'm sorry they couldn't open the right JV. The future holds many new techniques, and new procedures will be plenty.

Even if the CCSVI procedure keeps away progression, relapses or residual damage that is a big bonus. Good luck to you. I wish you the very best.
CD

Jdoyen, how long was it between the first procedure and the second procedure? I am trying to figure out how quickly these clots or complete blockages are happening.

It's good that your azygous was opened and, yes, you've just been through a surgical procedure, it takes a little while for healing. It is a real shame that the right jugular is now blocked, especially since it was functional originally.

Best wishes as you decide whether to continue down this path or not.

Thank you everyone for your posts.
To answer Cece the second procedure was done a little over two months since the first one.
I do not have any issues with clots and take a baby aspirin daily.
Have also been on .3mg LDN since October.
Will try and be patient about seeing results from this procedure.
MeanwhileI try to keep moving by walking with my walker an getting on a stationary bike for 20 minutes a day.

Jdoyen wrote:Thank you Cece,
Well I had the second procedure done this past week.
My RJV which was originally 60 -70% blocked is now unable to be opened.
My LJV was still normal and they were able to open and get more blood flow
In the Azagos.
No immediate relief.
I feel as though I continue to get worse.
I am told that I would be candidate for a bypass in the RJV when it becomes
available, however if there is no relief from the Azagos should I continue down this path.
I really want this to work and will give it more time to see if any improvements occur.

I totally understand what you are going through as my story is the same. With the first procedure they found stenoses of 70%. 80% and 90% in the azygous, RIJ and LIJ. Got great improvements that disappeared after about 1 week. Second procedure done 3 weeks later, revealed that I had clots in the stent and all 3 veins were now 98% blocked. They removed the clot and angioed all 3 veins again. Never recaptured the improvements and with the third procedure the doctor could not do anything. All 3 veins 100% blocked. Tried again with Dr Arata who could not help me either. Said all 3 veins were 100% blocked because of scarring, No blood clots. I am worse than ever. He told me the only thing that could help is a vein bypass and he putting me in touch with a surgeon who might be able to do the surgery.
Unfortunately I am hearing more people with the same outcome.

Dania, you have a hypercoaguability disorder, don't you? I worry that this is an important thing to mention or you may frighten people. Your situation is a bad one, I hold you in my hopes that there will be something the doctors can do.

I have heard too many outcomes where people have lost the use of a vein after ccsvi venoplasty. I wish we knew what the percentage was. But I have not heard any other story where people have lost two veins, let alone three.

Jdoyen, two months is a very short time. Did the doctor not think the complete blockage was from clotting? The other idea that has been mentioned is that if a vein is extremely overstretched, it might unzip on its own and lose its structure and collapse. Was your procedure covered under insurance, perhaps a second opinion from a different doctor on that blockage might be a good idea? Two months might still be within the window of time that something can be done.

Being patient and keeping moving both seem like healthy things to be doing. All the best, to you and dania.

vein

Cece wrote:Dania, you have a hypercoaguability disorder, don't you? I worry that this is an important thing to mention or you may frighten people. Your situation is a bad one, I hold you in my hopes that there will be something the doctors can do.

I have heard too many outcomes where people have lost the use of a vein after ccsvi venoplasty. I wish we knew what the percentage was. But I have not heard any other story where people have lost two veins, let alone three.

Jdoyen, two months is a very short time. Did the doctor not think the complete blockage was from clotting? The other idea that has been mentioned is that if a vein is extremely overstretched, it might unzip on its own and lose its structure and collapse. Was your procedure covered under insurance, perhaps a second opinion from a different doctor on that blockage might be a good idea? Two months might still be within the window of time that something can be done.

Being patient and keeping moving both seem like healthy things to be doing. All the best, to you and dania.

Cece, to set the record straight, I did say I had a clot and it was in my stent. The other veins had NO clots. But my veins are now closed from scarring. Nothing to do with blood clots. Other people had had blood clots and do not have a hypercoaguability problem. All 3 veins are now 100% blocked, I know this as I have tried this 5 times. What about the ones that do not get improvements and got worse, and do not try another procedure? They will not know what condition their veins are in. My point is that with some people when they restenoses (and about 50% do) The stenosis is more than what was originally. The fact that having the procedure and if 1vein closes up that is 1 vein too many.

The fact that having the procedure and if 1vein closes up that is 1 vein too many.

We are in agreement on this. I sometimes feel like Chicken Little, I am more panicky about clots than most around here, but I've seen outcomes of people who do lose veins. I don't want it happening to anyone.

dania wrote: Cece, to set the record straight, I did say I had a clot and it was in my stent. The other veins had NO clots. But my veins are now closed from scarring. Nothing to do with blood clots.

Scarring is the word for the end result after a blood clot has reorganized and become part of the wall of the vein. (It's like the vein scabbed over with the clot, then the scab dissolves and the scar is left. The scabbing or clotting in the first place is a result of the injury to the vein when it is ballooned.)

Scarring as a result of clotting can happen to anyone, but hypercoaguability makes it more likely. To have all three veins gone...it's a terrible outcome.

What about the ones that do not get improvements and got worse, and do not try another procedure? They will not know what condition their veins are in.

I agree, the message needs to get out to this group too. Follow-up doppler ultrasounds -- they dont' have to be full ccsvi ultrasounds, just a quick check of the valve area of the neck for clotting -- need to be done while patients are still within the window of time that clotting can be treated. By three months, a clot may be permanent. They may be most common immediately after the procedure.
I'll be going in for a follow-up ultrasound shortly too.

My point is that with some people when they restenoses (and about 50% do) The stenosis is more than what was originally.

I think you make an important point - people assume that restenosis is just a return to what it was before, they don't realize it can be even worse than it started.

I hate coming off as confrontational, dania, we need to hear your experiences here, they are valid and they are cautionary and I wish you all the best in turning this around.

Cece wrote:

The fact that having the procedure and if 1vein closes up that is 1 vein too many.

We are in agreement on this. I sometimes feel like Chicken Little, I am more panicky about clots than most around here, but I've seen outcomes of people who do lose veins. I don't want it happening to anyone.

dania wrote: Cece, to set the record straight, I did say I had a clot and it was in my stent. The other veins had NO clots. But my veins are now closed from scarring. Nothing to do with blood clots.

Scarring is the word for the end result after a blood clot has reorganized and become part of the wall of the vein. (It's like the vein scabbed over with the clot, then the scab dissolves and the scar is left. The scabbing or clotting in the first place is a result of the injury to the vein when it is ballooned.)

Scarring as a result of clotting can happen to anyone, but hypercoaguability makes it more likely. To have all three veins gone...it's a terrible outcome.

What about the ones that do not get improvements and got worse, and do not try another procedure? They will not know what condition their veins are in.

I agree, the message needs to get out to this group too. Follow-up doppler ultrasounds -- they dont' have to be full ccsvi ultrasounds, just a quick check of the valve area of the neck for clotting -- need to be done while patients are still within the window of time that clotting can be treated. By three months, a clot may be permanent. They may be most common immediately after the procedure.
I'll be going in for a follow-up ultrasound shortly too.

My point is that with some people when they restenoses (and about 50% do) The stenosis is more than what was originally.

I think you make an important point - people assume that restenosis is just a return to what it was before, they don't realize it can be even worse than it started.

I hate coming off as confrontational, dania, we need to hear your experiences here, they are valid and they are cautionary and I wish you all the best in turning this around.

I may be wrong but I do not think you have the right facts.
Dr Siskin told me everytime you perform the procedure you do a little damage to the vein (scarring). Not, you get a blood clots which turns into scars. One can get scars without having blood clots.

..

dania wrote:I may be wrong but I do not think you have the right facts.
Dr Siskin told me everytime you perform the procedure you do a little damage to the vein (scarring). Not, you get a blood clots which turns into scars. One can get scars without having blood clots.

I may be wrong too! Would like to know for sure on this.

The damage done every time you balloon is the injury to the intima or the lining of the vein. This can result in intimal hyperplasia, but that takes at least three months typically. It can also result in clotting as the body patches the injury, this can happen very quickly.

If any doctors are reading this, can the injury to the intima result in a direct scar, severe enough to close the vein, with no clotting involved?


I googled vein scar, this is what came up, I haven't much time to verify further:

How veins collapse:

Damage to the lining of the vein causes turbulence in the flow of blood

The turbulence causes clots to form on the inside of the vein.

These clots make the vein narrower, causing more clots to form, making the vein narrower still

Eventually the vein blocks, and the clots turn into scar tissue which shrinks and pulls the sides of the vein together, causing it to collapse..

http://new.sfaf.org/tspsf/speedometer/s ... _care.html

Cece wrote:

dania wrote:I may be wrong but I do not think you have the right facts.
Dr Siskin told me everytime you perform the procedure you do a little damage to the vein (scarring). Not, you get a blood clots which turns into scars. One can get scars without having blood clots.

I may be wrong too! Would like to know for sure on this.

The damage done every time you balloon is the injury to the intima or the lining of the vein. This can result in intimal hyperplasia, but that takes at least three months typically. It can also result in clotting as the body patches the injury, this can happen very quickly.

If any doctors are reading this, can the injury to the intima result in a direct scar, severe enough to close the vein, with no clotting involved?

About intimal hyperplasia, I discussed this with Dr Arata and he told me it takes about 3 months or longer to develop it. Seeing as my veins closed up in about a week he said hyperplasia is NOT my problem. But my veins are 100% closed with No intimal hyperplasia and No blood clots. I hope this answers your question.

dania wrote: I may be wrong but I do not think you have the right facts.
Dr Siskin told me everytime you perform the procedure you do a little damage to the vein (scarring). Not, you get a blood clots which turns into scars. One can get scars without having blood clots.

This is consistent with what Dr. Siskin told me too regarding repeated venograms. Note I said repeated venograms.

Hence, I am not having any more, not yet anyway. As I have stated before, my left ijv clotted and is 100% blocked.

Unfortunately my ms is worsening though, the more time that goes on.

I feel damned if I do anything more, damned if I don't. Can't win!

Another idea as to the scarring:

I asked my doctor if ballooning and/or stenting a vein can cause inflammation inside the vein, which then turns to scarring. He said, yes that can be a cause in some people. That is why baby aspirin is given as a anti-inflammatory and a anti-coagulant of the blood.
CD

On Wiki: Aspirin also has an antiplatelet effect by inhibiting the production of thromboxane, which under normal circumstances binds platelet molecules together to create a patch over damaged walls of blood vessels. Because the platelet patch can become too large, and also block blood flow, locally and downstream.