CCSVI in two days

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

CCSVI in two days

Postby FLJhawk » Sun Mar 11, 2012 7:48 am

I am scheduled for CCSVI March 13, which just happens to be my 57th birthday, in Clearwater, FL. I have my initial exam and consultation tomorrow then, bright and early Tuesday, will have the procedure, with a followup the next morning.

I am fairly new to MS, having late onset MS with still relatively mild symptoms, so I don't expect to see much improvement. .

I will decline any stents for now as I don't want to make anything worse since, at this point, I am not doing all that bad.

When I get back home Wednesday I will give a report. I won't be doing any Utube posts, given my symptoms are so mild that there would not be any drama in a before-and-after video!

My goals with CCSVI is to, first, see if I have blockages and how severe they are; get the blockages opened up to restore a more normal flow of blood through the brain; see how I react to the increased blood flow; and see what changes in symptoms I note and how long they might last. My hope from the treatment is that the cog fog will clear and I will have more energy and no longer have the leg discomfort that limits my walking a bit.

Also, I have noted for a number of years some slight discomfort in the sides of my neck, and only after reading about CCSVI did I make a connection. Not sure if blocked veins can be felt as a tightness in the neck that lasts for years, but I will be interested to see that if CCSVI will relieve that pain, as well as some ear ringing I have had.

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Re: CCSVI in two days

Postby Cece » Sun Mar 11, 2012 8:56 am

All the best, FLJhawk! And keep us posted with how it goes. You seem to have a level head about this with expectations in check.

You might want to decide ahead of time about renal vein stenosis, since stenting is the usual treatment for renal vein stenosis. Your doctor might not even check the renal vein. In the jugulars, if it is best to avoid stents unless absolutely necessary, one question might be to ask your doctor how often he uses stents. If the answer is around 3% of the time, then he is using them very sparingly. I would be cautious about getting a stent in the azygous vein unless IVUS is used, because the azygous is tricky and a physiological or natural narrowing could be mistaken for a stenotic one. Much depends on the level of trust you have in your doctor's judgment. (This is harder because of the lack of standardization in CCSVI.)

If a priority is to not make things worse, then another question to ask is how conservative or aggressive your doctor is in balloon sizing. It has been suggested that too big of balloons for the vein could increase the risk of scarring or thrombosis. You might ask how the doctor determines the endpoint, since continuing to balloon past an acceptable if not ideal endpoint could lead to vein injury. And another question would be what the anticoagulation regimen will be. If the answer is no anticoagulation, aspirin, or Plavix, then that would worry me. And again if not making things worse is important, then it is a good idea not to be among the first fifty CCSVI patients an IR treats.

All that said, I think you are making a good decision for your health, and wish you the best with it!
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Re: CCSVI in two days

Postby FLJhawk » Tue Mar 13, 2012 4:40 pm

Just briefly checking in aftet having had the procedure this morning.

Had a blocked valve in one jungular and a significant restriction in the other. Had two other more minor restrictions. It took some work for him to clear the valve - 6 balloons he said.

He doesn't like to use stents and none were needed.

My neck is pretty sore and the groin area tender, as to be expected.

I should be getting a disk with some of the images tomorrow. Dr. Jerry and staff were excellent. I will post more when I get home. Typing this on an iPhone us a chore!

Have not noticed any change in MS symptoms but it will take a while. I am not expecting a lot given my mild symptoms, but the doc said my cog fog and leg heaviness sould improve.
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Re: CCSVI in two days

Postby Cece » Wed Mar 14, 2012 4:38 pm

Glad you came through the procedure no problems and no stents! Keep us posted on how things go. Six balloons on the valve - I assume that means six inflations?
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Re: CCSVI in two days

Postby FLJhawk » Sun Mar 18, 2012 3:09 pm

I didn't get the disk with images to take home - they said they will mail it to me.

But, on day 5, I am doing well. Quite black and blue in the groin, but no pain there. The neck tenderness went away after a few days.

The procedure itself was fairly simple. On the first day, they did an MRI and ultrasound which showed some restrictions. Dr. Jerry said I had 1 of the 5 criteria for CCSVI on my left side and 2 of 5 on the right. He said I shouldn't expect a lot of improvement since my symptoms were so mild, but that the cog fog and leg heaviness should improve. However, he cautioned this was all experimental and he couldn't give any odds regarding improvement. He has done some 300 of these procedures and said he never uses stints unless the patient demands them or if the ballooning caused a tear which required a stint to repair. He also prescribes Pradaxa rather than aspirin and Plavix. He didn't encourage me to proceed, but said he has seen improvements in people with MS (but, of course, he was treating CCSVI and not MS) and he agreed with my comment that being treated early is better than putting things off.

The next day I went in bright an early. The staff was wonderful and took good care of me, inserting an IV and, yikes, shaving down there near my private parts! They weren't embarrassed about it so neither was I. In the OR, the PA took over and Dr. Jerry came in and they got started. They gave a mild sedative, but I was awake and conscious. I felt a small prick where the tubes would be placed, and the only other thing I felt was the balloon inflations. I thought I would feel the tube being run up inside me, but I didn't. He wanted me to keep him informed about any pain I was feeling during inflations. Most of the time the pain was mild, but a few times it got pretty uncomfortable, but it only lasted a few seconds. If I even said the pain was starting to become bad, he stopped.

I don't remember how long the procedure lasted. No more than an hour. I could see the display screens at times and it was fascinating to see it happening. I was too out of it to think to ask him to explain what he was doing at the time, though. When it was all over, they had me lay flat on my back for two hours, after which they let me sit up and they offered me a choice of things to eat and drink. After about 3 hours, they declared me fit. They helped me dress and wheeled me out.

I went back the next day for a quick ultrasound which was positive. They want me back in 3 months for a follow up.

Dr. Jerry and staff were really nice and he said all the right things regarding what I have been learning here. He told me that he assisted with the CCSVI conference in Orlando and was there, but did not present any papers.

At this point, as my original symptoms were mild, I cannot say if I have any improvements. My cog fog hasn't re-asserted itself yet, which could be a positive sign, and there may be some improvement in some other symptoms, such as possibly less leg heaviness. I have been off work for the last 2 weeks (vacation as well as time for the procedure), and I have three days of solumedrol (my third round) scheduled to start tomorrow, so maybe after tomorrow when I go back to work I may feel a return of symptoms.

The most interesting thing was the doc said when he injected dye in my right jv, he saw the flow go around the back of my head and out into the left jv. He said after ballooning the proper flow was restored. I hope I can see that when I get the disk of images!

Regarding the 6 balloons, it may have been a combination of balloons and inflations.

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Re: CCSVI in two days

Postby DIR » Sun Mar 18, 2012 6:23 pm

I am glad everything went great. The improvement after CCSVI treatments are usually gradual, but it is good to hear that you feel better. Our clinic in Dayton, OH also performs the CCSVI treatment and we have gotten similar results. Some patients notice improvements right away and other get better gradually. It is great to hear that CCSVI treatment is helping so many people and I hope it continues to do so.
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Re: CCSVI in two days

Postby FLJhawk » Tue Mar 20, 2012 5:49 pm

A week later I have some really ugly bruising in the groin, but not much discomfort there. Only if I press up against something does it become noticable. No signs of infection - just lots of deep red and blue.

I also noticed my neck has been a bit more sore over the last day or two.

On the good side, I am still doing well. I was off Betaserone for a few days (forgot to order a refill and then it took the insurance company several days to approve it - I have no idea why it takes so long to approve a refill that they should know I will be requesting evey 4 weeks and, in this case, it had actually been more than 4 weeks), plus yesterday I started another round of Solumedral. It generally makes me feel lousy after several days for a good week, so i might be dragging for the rest of the week and into next week.

But the brain remains clear and the leg heaviness is much improved! And I am hardly feeling any numbness. I have to attribute this mostly to the treatment.
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Re: CCSVI in two days

Postby DougL » Wed Mar 21, 2012 4:27 am

FLJhawk wrote:A week later I have some really ugly bruising in the groin,


are you still on Pradaxa? that might explain the bruise

FLJhawk wrote:But the brain remains clear


healthy brain, healthy body.

thanks for the updates.
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Re: CCSVI in two days

Postby FLJhawk » Wed Mar 21, 2012 8:21 pm

I am to be on Pradaxa for a month, I believe. Bruising is starting to clear and the neck discomfort is less today. Barely slept last night due to the Solumedrol. Today was my last of the 3-day treatment for the month and, based on past history, I should start feeling fatigued and lousy tomorrow which will last for a week. And, today, after the betaserone injection of last night, I should have had a bad day from the side effects, but nothing. Right now, I could almost believe I don't have MS!
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Re: CCSVI in two days

Postby FLJhawk » Tue Mar 27, 2012 3:44 pm

An update after 2 weeks.....

Just when I said I could almost forget I had the disease! Well, as expected, the Solumedrol has been a bummer. The day after the last of the 3-day treatment last week left me fatigued, with some cog fog and with numbness/tingling in the lower legs and my arms. These are symptoms I had previously had. Over the 6 days since, things are getting better and I hope by the end of the week I will be feeling halfway normal again.

The brusing is clearing up and not quite as sore. My neck is still a little sore, but better.

Overall, at 2 weeks, I can't say I feel better, but I am not worse and, as I said, I am probably still feeling the effects of Solumedrol which should be going away. And, too, I have just started Month 3 of Betaserone, and am still feeling the side effects. But, no complaints about the treatment thus far.
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Re: CCSVI in two days

Postby Cece » Tue Mar 27, 2012 3:54 pm

When do you have a doppler ultrasound scheduled? Some doctors leave it to three months afterward, some patients don't do it at all because of the difficulty of travel, but it seems logical to have a doppler at one month because, if there is clotting occurring, this would catch the clot early before it has time to do as much damage to the vein as it would if caught later on.

Keep us posted! Not better and not worse is a disappointing outcome, but maybe it will improve. Two weeks is still early.
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Re: CCSVI in two days

Postby FLJhawk » Tue Apr 10, 2012 5:19 pm

Here is my 4 week report.

The last two weeks have been interesting. I have gone from feeling the best since I was diagnosed to feeling about the worst but, some good news, things are a little better. The downward trend started after I completed a round of scheduled Solumedrol, where I get three days of 1,000 mg. In the past, I usually feel worse after the treatment for a week or so, and this time was no different, but then I didn't get better and I was having increasing neck pains and the numbness in my legs and arms became worse. I finally started seeing a relaxing of symptoms towards the end of last week, but then I feel numby and fatigued at others. The neck pain is largely gone and I guess it will be a wait and see to know things are going to turn out.

To complicate matters, I started LDN later last week, 2 mg/night right now, and my improvement started right after I started taking it. I have no idea if the LDN is causing the improvement or if was simply time for me to improve.

I have had a few episodes of where my vision gets bad for a bit (maybe an hour or so), in which I get a blind spot and some of my vision kind of undulates in an arc further out. I attribute it as a side effect of the LDN, as this is a new symptom but, today, it did nor recur.

So, overall I am feeling better relative to a week ago, and hope for continued improvement. I am scheduled for more Solumedrol next week, but I am wanting to cut back on the dose to maybe 750 mg. I will gradually increase the LDN to the recommended 4.5 mg over April, and I am continuing with the Betaserone. I spoke with my neuro over the weekend (we are sort-of friends) and he told me to keep doing what I am doing as he thinks I am doing great. Well, back in December I was going downhill fast I thought, so I feel very fortunate to actually be no worse than I was back then. CCSVI is just one of the things I am using to fight this MS thing!

Still have no regrets about CCSVI and have no reason at this point to believe it is not helping to at least some extent. I don't know if having a rough 2-3 weeks after the procedure is normal or not. Who knows, I might have been due for a major relapse 2 weeks ago and having CCSVI may have nipped it. With MS, you just never know!

Thanks, Cece and others, for your words of advice.
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Contradictory Drug Mix ???

Postby MarkW » Wed Apr 11, 2012 3:40 am

I advise that you seek expert advice on mixing LDN/interferon/steroid. It does not seem logical to me............MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI in two days

Postby FLJhawk » Wed Apr 11, 2012 8:21 am

I have heard both ways about Betaseron and LDN, but concluded it was ok though the effectiveness might be slightly reduced. I never thought about there being any issue with LDN with Solumedrol. My neruo knows about it all, obviously, but he his not well versed in LDN.

Thanks for raising the issue, but does anyone really know?
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Re: CCSVI in two days

Postby Cece » Wed Apr 11, 2012 8:33 am

CCSVI is just one of the things I am using to fight this MS thing!
I agree with this approach wholeheartedly.
All the best for continued improvement!
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