I had bilateral jugular blockage, was treated in Sept. 2010, had improvement for 2 or 3 days, developed very sore jugulars, and the improvements went away. I did not get follow up diagnosis until March 2011. at that time, I had bilateral jugular reflux , diagnosed per color doppler ultrasound. The testing was done at the American Access center in San Diego by a technician recently trained in the Zamboni procedure at Sclafani's center in New York, so I have good trust in the results.
In consulatiation after the diagnosis, the interventionalist in San Diego, Dr. Rattner, said he didn't really think I would see any improvement if I had the procedure done again. I was originally hoping only that my progression would stop, but there is no evidence that that happened either.
My insurance no longer covers this. I really, really don't want a stent at this time. I can't afford to keep paying for treatments out of pocket, and the longer I wait the better info we develop, my progression is very slow, so I have been sitting on the sidelines so far. However, this forum is a very educated and thoughtful group of people for the most part. I am curious ...
What advice to you people have? Wait? Go forward now and try again?
I would love it if some of the Dr.'s in the forum weighed in, but I know they are very busy and there is probably enough detail for medical advice here.
What to do, What to do? Restenosed
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fogdweller
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Hi Fogdweller
I can't give any advice, I'm kind of in the same boat. But I do have a question for you - why did Dr.Rattner think you wouldn't benefit? Did you not see improvement the first time?
I've been told to wait until after the symposium in July and hear what they have discussed about re-treatment.
Thanks
I can't give any advice, I'm kind of in the same boat. But I do have a question for you - why did Dr.Rattner think you wouldn't benefit? Did you not see improvement the first time?
I've been told to wait until after the symposium in July and hear what they have discussed about re-treatment.
Thanks
I haven't heard too many glowing reports of RE-treatment. Most people seem to experience some benefit in the first round and then not much the second round. Since the procedure can cause scarring each time the balloon is inflated, I would probably wait. In fact, I am. I had the procedure but did not get much benefit, and even with a slow and steady decline, I have decided to wait for more evidence. to each his own though!
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blossom
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ccsvi
i agree with ikulo. that is what i am doing. besides ,being ppms myself, even though i had stenosis and treated with no improvement i am not happy that i came out of the treatment with a very numb leg something i did not have before procedure. and it still exists and i am worsening at a faster pace. they never gave me an explanation about the numbness but since the femoral vein and the femoral nerve are so very close at the point of entry and i had no clotting etc. injury to the femoral nerve is the only logical thing.
so, remembering even though angioplasty itself is pretty safe it has risks. until they can come up with a better way to prevent intimal hyperplasia etc. i still have not gotten any answers on how many times it can be done until the veins say enough is enough. also it seems that ppms has more to do with the spinal veins. which noone is touching that at this time.
everyone makes their own choices just like i did. "but at that time i really thought i understood more than i did." i was treated aug. 3, 2010. since then a lot has happened--good and bad.
so, for now, i figure been there done it. pray my veins stay at least as good as before treatment---and play wait and see.
this is very hard to do also as daily a bit more of the life in your body dies off and more of life itself fades away. hopefully soon they will get this figured out better. if you are paying out of pocket that is a concern. i would give everything i have to be well. but, are they there yet, is it worth the risks? in my eyes no. "not yet."
so, remembering even though angioplasty itself is pretty safe it has risks. until they can come up with a better way to prevent intimal hyperplasia etc. i still have not gotten any answers on how many times it can be done until the veins say enough is enough. also it seems that ppms has more to do with the spinal veins. which noone is touching that at this time.
everyone makes their own choices just like i did. "but at that time i really thought i understood more than i did." i was treated aug. 3, 2010. since then a lot has happened--good and bad.
so, for now, i figure been there done it. pray my veins stay at least as good as before treatment---and play wait and see.
this is very hard to do also as daily a bit more of the life in your body dies off and more of life itself fades away. hopefully soon they will get this figured out better. if you are paying out of pocket that is a concern. i would give everything i have to be well. but, are they there yet, is it worth the risks? in my eyes no. "not yet."
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civickiller
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The following is simply a brainstorm, not a suggestion. I have not researched the risk, cost, or feasiblity of any of this. But I wonder...
If your IJV blockage is accessible via neck dissection, would an IJV bypass be an option? Whereas the risk associated with invasive bypass operations is probably 10-fold (or maybe 100-fold!) that of simple PTA, lets not forget that bypass operations have been done tens of thousands of times over the past few decades, with (I think) fairly low mortality rates, even considering that in those surgeries (usually cardiac), they had to stop your heart! I'm pretty sure an IJV bypass would not require a heart/lung machine.
Does anybody know if this has been done, or even considered? Here's the irony- if you got a vascular surgeon to say you needed a bypass, your insurance would probably pay for it.
Just thinking out loud...
If your IJV blockage is accessible via neck dissection, would an IJV bypass be an option? Whereas the risk associated with invasive bypass operations is probably 10-fold (or maybe 100-fold!) that of simple PTA, lets not forget that bypass operations have been done tens of thousands of times over the past few decades, with (I think) fairly low mortality rates, even considering that in those surgeries (usually cardiac), they had to stop your heart! I'm pretty sure an IJV bypass would not require a heart/lung machine.
Does anybody know if this has been done, or even considered? Here's the irony- if you got a vascular surgeon to say you needed a bypass, your insurance would probably pay for it.
Just thinking out loud...
Ditto for me.ikulo wrote:I haven't heard too many glowing reports of RE-treatment. Most people seem to experience some benefit in the first round and then not much the second round. Since the procedure can cause scarring each time the balloon is inflated, I would probably wait. In fact, I am. I had the procedure but did not get much benefit, and even with a slow and steady decline, I have decided to wait for more evidence. to each his own though!
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fogdweller
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Thanks everyone who has chimed in!! It sounds as though most of you are pretty much of the same mind as I am. I am going to wait and see.
I think we are learning alot about the chronic vascular input to this disease I believe very strongly that the vascular approach is the right one. I have strong doubts about autoimmunity in general. I have no use at all for EAE; I don't even bother to read the research papers anymore if they are focused on how something affects EAE. I doubt it is very relevant. I agree with Britain; we have wasteds a huge amount of time and money focusing on the DMD drugs. I have very slow PPMS so waiting is not too scary for me, and in a year or 5 there may be a different picture. I intend to follow this and support the effort fully, but I think another angioplasty is not in my immediate future.
And definitely not a bypass! even the scars and minor side effects would be more harmful than the progress I am likely to suffer.
I think we are learning alot about the chronic vascular input to this disease I believe very strongly that the vascular approach is the right one. I have strong doubts about autoimmunity in general. I have no use at all for EAE; I don't even bother to read the research papers anymore if they are focused on how something affects EAE. I doubt it is very relevant. I agree with Britain; we have wasteds a huge amount of time and money focusing on the DMD drugs. I have very slow PPMS so waiting is not too scary for me, and in a year or 5 there may be a different picture. I intend to follow this and support the effort fully, but I think another angioplasty is not in my immediate future.
And definitely not a bypass! even the scars and minor side effects would be more harmful than the progress I am likely to suffer.
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drsclafani
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I think that this discussion does too much lumping together.
If ihad relapsing remitting MS and i had ANY improvement however short, and then lost it, I would be very concerned that I had an incomplete or a complicated treatment. I would certainly get an ultrasound (simple technique to see if I had a thrombosis. if so i would certainly want to try to get that vein open as soon as possible. If the clot was suspected to be more than a few weeks old, I would want to be anticoagulated.
If I had primary progressive disease or I had long standing SPMS with severe manifestations and high EDSS I would think twice about spending more money on a treatment that hadnt given me any significant effects.
If i had a good improvement and starting dropping back several months later, i would try to get another venogram as soon as i could. Repeat treatments can induce reversals of deterioration. But seems like the longer one waits, the less likely improvements will be great.
I have heard many state that PPMS is primarily a problem of lumbar veins. I have found no good correlation between type of MS and vascular pattern
good luck fogdweller
If ihad relapsing remitting MS and i had ANY improvement however short, and then lost it, I would be very concerned that I had an incomplete or a complicated treatment. I would certainly get an ultrasound (simple technique to see if I had a thrombosis. if so i would certainly want to try to get that vein open as soon as possible. If the clot was suspected to be more than a few weeks old, I would want to be anticoagulated.
If I had primary progressive disease or I had long standing SPMS with severe manifestations and high EDSS I would think twice about spending more money on a treatment that hadnt given me any significant effects.
If i had a good improvement and starting dropping back several months later, i would try to get another venogram as soon as i could. Repeat treatments can induce reversals of deterioration. But seems like the longer one waits, the less likely improvements will be great.
I have heard many state that PPMS is primarily a problem of lumbar veins. I have found no good correlation between type of MS and vascular pattern
good luck fogdweller
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Interrupted
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Hi Fogdweller,
I had the procedure in October last year, felt no benefit but have actually got a lot worse since and do still get pains in my jugular veins. So although I have not been back to Poland for a checkup, I would be very surprised if the bilateral stenosis hadn't re-occured.
The thing is, I don't think I had the correct treatment to ALL the areas necessary 'for me'. I think at the time, the production line was not treating people as individuals with problems in different areas and that this can be very detrimental to some of us. I suspect I have more problems than in just the jugular veins but as these things aren't yet really being looked at generally I don't see the point in going for the check up, let alone trying another procedure when I had no benefit and worsening the first time.
I feel that if I do it again, I want to KNOW that everything is being covered (as Dr S says, lumbar/CS veins/even pelvic) and that will be a few years away. I may be past help by then, who knows, but my body just can't take going through it again only to result in worsening and possible scarring/ruining any possibility that being patient may give me a chance x
I had the procedure in October last year, felt no benefit but have actually got a lot worse since and do still get pains in my jugular veins. So although I have not been back to Poland for a checkup, I would be very surprised if the bilateral stenosis hadn't re-occured.
The thing is, I don't think I had the correct treatment to ALL the areas necessary 'for me'. I think at the time, the production line was not treating people as individuals with problems in different areas and that this can be very detrimental to some of us. I suspect I have more problems than in just the jugular veins but as these things aren't yet really being looked at generally I don't see the point in going for the check up, let alone trying another procedure when I had no benefit and worsening the first time.
I feel that if I do it again, I want to KNOW that everything is being covered (as Dr S says, lumbar/CS veins/even pelvic) and that will be a few years away. I may be past help by then, who knows, but my body just can't take going through it again only to result in worsening and possible scarring/ruining any possibility that being patient may give me a chance x
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
starting with the Zamboni 65 ...... restenosis is expected ....... in a certain percentile of pwMS.
We know this.
We also know ..... that when those who restenosed were treated a second time ...... again ..... they responded to the treatment.
This is what has convinced Mr. Success that Professor Zamboni's
incredible discovery - CCSVI - ............ exists .
As always .... the devil is in the details
How do we keep the stenosis open ?
Stents ? Multiple procedures ? Medications ?
I think it will eventually be a combination of all three.
Mr. Success
We know this.
We also know ..... that when those who restenosed were treated a second time ...... again ..... they responded to the treatment.
This is what has convinced Mr. Success that Professor Zamboni's
incredible discovery - CCSVI - ............ exists .
As always .... the devil is in the details
How do we keep the stenosis open ?
Stents ? Multiple procedures ? Medications ?
I think it will eventually be a combination of all three.
Mr. Success
I was treated in Europe last August. I had some very fleeting improvements but also some that still persist and a few that are gradually fading. I am spms. I have decided to borrow the money and be treated again next month--not in Europe. I think there is a balance to consider, one one side, it is expensive and still not proven. Doctors are discovering more every month. But on the other hand, many of us were undertreated or had flow disturbances not identified the first time. Of course, some simply restenosed, but others were incompletely treated.
It is an individual decision and for many of us, cost is a major factor. This next treatment will cost me significantly more than the previous attempt. It will be my last attempt unless insurance starts paying. We are traveling, paying for hotels, car and treatment hoping that a very thorough comprehensive treatment will uncover previously unidentified uncorrected problems and make a real QOL difference. Whether it works out that way remains to be seen. But this is not a one-size-fits all topic.
It is an individual decision and for many of us, cost is a major factor. This next treatment will cost me significantly more than the previous attempt. It will be my last attempt unless insurance starts paying. We are traveling, paying for hotels, car and treatment hoping that a very thorough comprehensive treatment will uncover previously unidentified uncorrected problems and make a real QOL difference. Whether it works out that way remains to be seen. But this is not a one-size-fits all topic.