line up local follow-up before treatment!

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

line up local follow-up before treatment!

Postby fogdweller » Sat Oct 16, 2010 12:11 pm

I just wanted to post my experience that emphasized the need to line up local follow-up before treatment.

I was diagnosed and then treated at a site about 9 hours drive from my home. At the time of treatment (the doctor's office the day before) I asked about restenosis and follow-up. The doctor said they had not been seeing restenosis so they didn't look for it. No follow-up plan was suggested.

After the procedure (both jugulars angioplastied) my neck was sore but I had great improvement in mental issues (optical processing, mood and feeling of not beeing sick) and leg muscle coordingation. I really wasn't expecting anything so I was very pleasantly surprised. However ...

Those effects faded quickly. I have a sore, stiff neck (may not be realated) and both leg pain and recovery time after strenuous exercise has increased to significantly higher than pre-treatment levels.

As a result, I suspect restenosis, at least to pre-treatment level. I am looking for a place to get follow up treatment somewhere. I hope I am successful, but it would have been a lot easier if I had done it before I went in for treatment.
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Postby dunkempt » Sat Oct 16, 2010 2:16 pm

Yes, yes to local, of course!
But I would say to someone who was in my position (thousands of miles from a clinic competent even for testing), at least work out and budget in follow-up care. For me a follow-up for evaluation in Poland would be about $1500. A possible 2nd procedure would cost about $4000 (2nd procedure + airfare).
I've had a 6month check-up closer to home after all; I plan on going to Poland for a 12-month follow-up. The cost of a 2nd procedure would be unpleasant but manageable.
Not the best situation; just better (I think) than having let my veins remain blocked for the forseeable future...
-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby esta » Sat Oct 16, 2010 4:27 pm

almost ditto to dunkempt, i went back to poland and got a stent.

being from western canada, i will probably do a doppler follow-up at false creek in vancouver and have to pay. i don't feel welcome in the system yet nor trust their expertise...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby esta » Sat Oct 16, 2010 4:34 pm

oops...sorry, i did'nt answer your question right...i'd be connecting with the doc who did it firstly. barring that, i'd be going where they've done lots...of course, poland.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby newveins » Sat Oct 16, 2010 4:35 pm

That sure is a problem, not difficult to get a doppler, they all say they can do it, but really there are less than a handful of Zamboni protocol doppler places in the US and it is overkill in my opinion with all those expensive MRVs not to mention unpleasant. We really need quick inexpensive dopplers for followup.
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Postby fogdweller » Sat Oct 16, 2010 6:07 pm

newveins wrote:That sure is a problem, not difficult to get a doppler, they all say they can do it, but really there are less than a handful of Zamboni protocol doppler places in the US and it is overkill in my opinion with all those expensive MRVs not to mention unpleasant. We really need quick inexpensive dopplers for followup.


I didn't say I had an aswer. In fact I am having an interesting time. One of the questions I have outstanding to Dr. Scalani is what the proper follow-up testing is. Venography is invasive, expensive, time consuming etc. I really don't think MRV tells us very much. Doppler is cheap and noninvasive but few can do it right or have the fancy color dopler equipment that seems to be needed. Something should be available as a fist step.

That is sort of how they did my procedure. The MRV showed enough stenosis to warrant intervention, so once theyu were in they did extensive venography. Something similar should work for follow up too.
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Postby drsclafani » Sat Oct 16, 2010 7:29 pm

fogdweller wrote:
newveins wrote:That sure is a problem, not difficult to get a doppler, they all say they can do it, but really there are less than a handful of Zamboni protocol doppler places in the US and it is overkill in my opinion with all those expensive MRVs not to mention unpleasant. We really need quick inexpensive dopplers for followup.


I didn't say I had an aswer. In fact I am having an interesting time. One of the questions I have outstanding to Dr. Scalani is what the proper follow-up testing is. Venography is invasive, expensive, time consuming etc. I really don't think MRV tells us very much. Doppler is cheap and noninvasive but few can do it right or have the fancy color dopler equipment that seems to be needed. Something should be available as a fist step.

That is sort of how they did my procedure. The MRV showed enough stenosis to warrant intervention, so once theyu were in they did extensive venography. Something similar should work for follow up too.


i believe that followup should be done by doppler at one month, three months, six months, then every six months after that.
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Postby Brainteaser » Sat Oct 16, 2010 8:29 pm

From all reports, doppler assessment is a waste of time and money - I know mine was.

If a hospital has provided treatment in the first instance or even for people coming back from OS, I would have thought there is a legal and/or ethical obligation to follow up on a regular basis by the only certain means to reassess - ie a venography.
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Postby newveins » Sat Oct 16, 2010 9:02 pm

I certainly would not want a venogram as a follow-up unless I had deteriorated substantially for me to suspect restenosis. It is invasive and carries risks not to speak of being costly.

Doppler is not a waste of time if done properly by an experienced technician, also if having been treated the technician will know where exactly to look for restenosis. If ccsvi gets proven to be useful longterm doctors will hopefully establish relationships with doppler technicians. It is interesting what Haacke is developing, but in my opinion it is good and inexpensive doppler places we need for follow-up not MRVs or venograms.
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Postby David1949 » Sat Oct 16, 2010 9:05 pm

If the Hubbard registry gets off the ground there will be many clinics scattered across the US. That should give most Americans a clinic within a few hours drive.

Clinics involved with the Hubbard registry will use MRI according to the Hubbard website:
"The P.I. will obtain informed consent and
refer the patient to a nearby MRI facility that has been qualified for
comprehensive CCSVI testing per the Haacke-Hubbard protocol. The MRI
images are analyzed by the Haacke-Hubbard staff and if positive for
CCSVI, the P.I. will perform catheter angiography, and venoplasty of
identified CNS draining venous obstructions. Patients will be
followed at 6 and 12 months by MRI and and fill out quality of life
questionnaires before and at 1, 6 and 12 months after the procedure.
This is a registry not an experimental study, the participating
physicians will be billing for the tests and treatment, but we expect
insurance will typically cover these expenses."


Source: http://hubbardfoundation.org/CCSVI_mult ... ction.html

As I understand it, by using the Haacke Hubbard protocol they can see blood flow and quantify it. I don't know well how that compares to the Doppler ultrasound.

I wonder if Dr. Sclafani could comment on that.
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Postby Brainteaser » Sun Oct 17, 2010 3:58 am

newveins,

I think you might be expecting too much from doppler assessments. It seems to be a very rare skill. I've had it 4 times, even by two of the best in the business - Zamboni and Simka, all with different results.

On the other hand, the IR's say that a venogram is the gold standard for assessment of CCSVI.

Your other 2 points -

- safety of venograms: IR's have performed operations on patients many times without apparent danger. Repeated angioplasty seems necessary to retrain the veins.

- cost: why is the life of a CCSVI sufferer worth considerably less than patients with a wide range of other ailments or other public goods and benefits?

Phil
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