CCSVI in two days

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

Re: CCSVI in two days

Postby 1eye » Wed Apr 11, 2012 4:53 pm

Your post procedure anti-clotting regime is very important, and has been addressed in at least one paper posted here. Take the most conservative approach you can, as it can make your symptoms worse if your blood clots. I understand that is worse with stents, but my own veins have not held up completely and I don't have stents.
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Re: CCSVI in two days

Postby FLJhawk » Wed Apr 11, 2012 7:59 pm

I am coming off the Pradaxa tomorrow. That will be nice. One less drug to worry about!
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Re: CCSVI in two days

Postby FLJhawk » Tue Apr 17, 2012 9:42 am

Well, it has been 6 weeks, so here is a brief update. Today I am feeling pretty good with hardly any numbness or tingly feelings, and I am walking pretty good. Part of the last week had periods numbness/tingling/pain in the arms and lower legs, and I noticed walking was a little more challenging, though let me add again I have relatively mild MS symptoms and most people around me have no idea I have a neurological disorder yet.

But, as with most of us, my MS symptoms can change hour-to-hour. I have joked that I can wake up feeling pretty good, then I go to work and feel miserable - numby and tingly and fatigued and where time seems to slow down and the day goes on and on and all I want to do is go home and take a nap -- and then when I finally get home, I find I can't rest - so I get up and try to do some things (I am single and my kids are away in college) and I start feeling better.

Anyway, I started my Solumedrol treatment again yesterday, so that could be causing me to feel better but, I usually start to feel worse after the third day. But, tonight it Betaseron night, and the next day usually takes me down. I am also up to about 2.5 mg of LDN. I have no idea if that is helping yet or not. I think I in week 2 on that, so it is still early. I have heard LDN can cause leg pain, but I used to have that before LDN, so I doubt LDN is the cause.

Back to the CCSVI, the bruising is all gone. The Pradaxa is all gone. There is still a small scar in my groin and a tad bit of tenderness there that I only feel if pressure is applied to the area. So, bottom line, at week 6, at least at lunch time, I feel really good, certainly better than the first of the year which was my worst period with MS, so things seem to be working. How much is due to CCSVI, to the normal stages of MS, to LDN, to Betaserone (in my 3rd month of that when it starts to become effective), or even to diet, is simply unknowable. No one can use me in a study as I have tried so many different things!

I am still keeping an eye towards stem cell treatment with Dr. Slavin. I want to put that off as long as I can, as there are frequent improvements in the entire field of stem cells, so until I feel things are really going down and I am worse that I felt at the first of the year, I will hold off. I may not hold off too long as just because I am not sensing continued degeneration, that doesn't mean it isn't happening.
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Re: CCSVI in two days

Postby tiltawhirl » Wed Apr 18, 2012 3:08 pm

Thanks very much for your detailed updates FLJhawk! I have been following along and will be posting my own results as well.
I currently rank at 5 on the EDSS. Cane for walking the past 6 years, wheelchair for longer distances the past 3. I hope to see positive results as well.

All the best as you continue to recover.


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Re: CCSVI in two days

Postby FLJhawk » Wed Apr 18, 2012 9:53 pm

I am happy to be providing helpful information to others. I think my own EDSS score is around 2. Being so mild and can't expect any more than a mild outcome from CCSVI.

I have just finished ny third day of Solumedrol and I took my Beta and LDN last night. I am slightly spacy right now, at midnight, tired but not tired. I should start to feel really fatigued as I come off the steroids tomorrow and I again won't be able to sleep well, but we will see. I got some Ambien and Benedryl here. Hope that after CCSVI treatment the down time won't be so long. But, I am feeling a little jittery, which I attribute to the Solumedrol, but otherwise I am feeling fairly good. I am walking and standing well, except for some of the jitters from me being pumped with steroids. But, the MS effects are minimized and if mostly feels like I am high on too much coffee.

I am gaing more confidence in how my MS is preceeding or possibly receeding. Too early to tell, but things are better over the past week or two, so maybe it simply takes CCSVI a while to get going in my particular case. I should add that my MRI did not show the typical brain leasons. I have a large foggy patch of demylinization, and this type may not be easily treated by CCSVI. I don't know, though I would think any improved blood outflows whould be of benefit to the entire brain.

I welcome comments and will contine to report back as long as I feel it is helping someone.
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Re: CCSVI in two days

Postby Cece » Thu Apr 19, 2012 9:48 am

FLJhawk wrote:I am happy to be providing helpful information to others. I think my own EDSS score is around 2. Being so mild and can't expect any more than a mild outcome from CCSVI.
As someone also with mild MS (EDSS from 0 - 1 depending on exam), I have to disagree slightly. CCSVI treatment treats CCSVI, and it is possible to have severe CCSVI but mild MS as measured by EDSS.
I am gaing more confidence in how my MS is preceeding or possibly receeding. Too early to tell, but things are better over the past week or two, so maybe it simply takes CCSVI a while to get going in my particular case. I should add that my MRI did not show the typical brain leasons. I have a large foggy patch of demylinization, and this type may not be easily treated by CCSVI. I don't know, though I would think any improved blood outflows whould be of benefit to the entire brain.

I welcome comments and will contine to report back as long as I feel it is helping someone.

I definitely think that these sorts of threads help people who are considering the procedure themselves. MS is up-and-down prior to the procedure and can be up-and-down after the procedure. So it's good to hear over time how things are going, and it sounds like you are doing well! And that you've had quite a year this past year.
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Re: CCSVI in two days

Postby FLJhawk » Tue Apr 24, 2012 11:04 am

I guess I am now at 7 weeks post-CCSVI. Still not sure if things are better or not.

I mentioned last time I was undergoing Solumedrol treatment, which I get for three days every 4 weeks. As pretty much expected, after the final dose last Wednesday I started going down hill. This always seems to happen. This time, there is the normal fatigue but a lot of numbness in the lower legs and wrist areas which started last Thursday, and is more bothersome than I remember from before. I had been having some leg heaviness, but that seems to have gone away at least. I am starting to feel a little better, but the numby feelings are hitting me again today after lunch, along with a headache. I did take Beta last night, so there might be a relation there. I did tell my neuro Saturday that we will be cutting the dose of Solumedrol in half next time! These reactions just aren't worth it, plus I always get anxious wondering if these feelings are totally due to the Solumedrol and Betaseron, or if I might be progressing. The level of numbness kind of makes me think I am progressing a bit, but I still have a few more days of recovery from the steriods before I start to make that judgement.

So, the jury is still out on my CCSVI. Once I get over the Solumedrol later this week, I should be starting to get an idea of how things went. Essentially all of the soreness and brusing in the groin is gone and there is only a tiny scar left (plus missing hair!). The tinnitis I mentioned comes and goes, but may be slightly improved. The twitching above my right ear might be getting a little worse. I think it is a muscle thing and not a blood thing, though, and should be unrelated to the CCSVI. Otherwise, I can't really tell that I had CCSVI.
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Re: CCSVI in two days

Postby cheerleader » Tue Apr 24, 2012 2:43 pm

FLJHawk--
please be aware of the dehydrating properties of solumedrol, and drink plenty of fluids. Corticosteroids are known to dehydrate, and could cause lower blood volume and impede good flow. Hydration is essential.
A potentially confounding effect of the dehydrating properties of high-dose glucocorticoids, leading to pseudoatrophy--

http://www.biomedcentral.com/1471-2377/6/19
http://www.ncbi.nlm.nih.gov/sites/entre ... 00m,isrctn

Also, LDN is NOT indicated to take with interferon and steroids--
LDN should not be used by people already receiving interferon (Beta Seron, Avonex, or Rebif).
Because LDN stimulates the immune system and interferon suppresses it, the two therapies are
incompatible. The combination of these therapies does not cause any adverse reactions, but it is
believed that they cancel out each other’s effectiveness.

http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html
In regard to the use steroids, chemotherapeutic agents, and other immunosuppressants to treat MS and other autoimmune diseases, Dr. M.R. Lawrence, an English physician with MS who treats his condition with LDN, has this to say:
Because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS [and other autoimmune conditions] further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit [to your doctor] a full list of the drugs you are presently taking so that their compatibility may be assessed.

http://www.webspawner.com/users/avoidth ... index.html
You've got a lot going on in the body....please talk to your doc.
take care,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI in two days

Postby FLJhawk » Wed May 02, 2012 7:38 pm

Ok, time for my, what, 8 week update?

Thanks for the concern, cheerleader. Yeah, a lot going on! My neuro knows except for the CCSVI! He is a social friend and somewhat tolerant of what I want to do. I don't think he would let his other patients take LDN!

Anyway, I had hoped last week I would have a more definitive answer on if CCSVI has helped. Unfortunately, I have slightly progressed. I have been noticing a higher level of numbness in my hands and in my body overall. Before I had it in my lower legs and arms/wrists. That has faded to be replaced by this other, more general numbness. Today some of the leg pain is back and I have noticed a tad bit of speech problems.


I am still fatigued and have difficulty sleeping, and walking was a tad more challenging today, but no need of walking aids yet. I don't think the cog fog was gotten any worse and might be the one thing that might be a little better. Also, some of the neck discomfortant I had starting about a month ago, which had been better, has come back somewhat, and that twitching over the ear has gotton worse. However, I think it is a muscle issue and not a blood vein issue. I have had some very rapid twitching -- too rapid to be from blood flow. I don't see how it can be related to CCSI, but it is something that had never happened pre-CCSVI.

I don't think I will be updating every week after this. If something significant happens I will report back, and I will report when I get my followup ultrasound. I don't know that CCSVI is something I would want to repeat since I didn't notice much improvement right after treatment, but I will take other's advice on that, and won't make a final decision until after the followup. But, no, I have no regrets trying this! As I think I may have said, I tend to think my presentation of MS demyalization in the brain is different than most and may simply not respond well to CCSVI. Don't know.
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Re: CCSVI in two days

Postby FLJhawk » Tue May 08, 2012 2:24 pm

Well, I wasn't going to post a 9 week report, but things have improved a bit so here I am.

While I was numby all over last week, things suddenly got better last Thursday. Most of the numbness is gone, though some remains in my hands, but it is not constant. No leg heaviness or significant cog fog and less fatigue, but the legs feel a bit weak when walking, but mildly so and remains pretty much unchanged over the last month or two.

Still nothing that I can attribute to CCSVI, either good or bad, and I suppose the ups and down are just part of MS. But Cece said her improvements continued to come for many months, so maybe things might be worse now had I not had the treatment. No way to know.

I have another Solumedrol treatment coming up next week but, as I said before, I will have a reduced dose this time.

Not sure if anyone is still reading this or gaining any benefit. I will only report significant changes in the future.
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Re: CCSVI in two days

Postby tiltawhirl » Tue May 08, 2012 3:14 pm

FLJhawk wrote:Well, I wasn't going to post a 9 week report, but things have improved a bit so here I am.

While I was numby all over last week, things suddenly got better last Thursday. Most of the numbness is gone, though some remains in my hands, but it is not constant. No leg heaviness or significant cog fog and less fatigue, but the legs feel a bit weak when walking, but mildly so and remains pretty much unchanged over the last month or two.

Still nothing that I can attribute to CCSVI, either good or bad, and I suppose the ups and down are just part of MS. But Cece said her improvements continued to come for many months, so maybe things might be worse now had I not had the treatment. No way to know.

I have another Solumedrol treatment coming up next week but, as I said before, I will have a reduced dose this time.


Not sure if anyone is still reading this or gaining any benefit. I will only report significant changes in the future.


Yes!

I just checked this thread today to see how long I can expect neck pain. Your info is appreciated by myself, but also all the folks that don't register and/or post.
(I lurked for 2 years before 'coming out' of the MS closet myself here.)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: CCSVI in two days

Postby Cece » Tue May 08, 2012 6:08 pm

Yes, still reading.
It's difficult to interpret improvements or lack of improvements if a patient's MS isn't stable prior to the procedure. The nature of MS can be up and down, back and forth. My own MS has been extremely stable, with years between relapses but with constant fatigue and other symptoms, so when I had the procedure done, it was easier to attribute the improvements directly to the procedure.
Keep the reports coming. Glad you're doing better this week.
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Re: CCSVI in two days

Postby FLJhawk » Wed May 16, 2012 6:07 pm

Ok, here is my 10 week report!

First, I just completed my 3rd and final day of Solumedrol, but with the doseage dropped to 500 mg. I am having problems sleeping. Took 10 mg Ambien and a Benedryl last night and still had problems. I am really dragging now from lack of sleep, and I suppose the withdrawl effects will kick in and the next week will not be fun.

Also, I should add that I went off Betaserone for a bit over two weeks, restarting it 10 days ago. Coming back on seems to be causing some effects. Not sure why I failed to mention this is my last reports.

Anyway, I am doing pretty good. There is still a low grade numbness in my legs and hand. I get a little fatigued if I overdo things, but not too bad. There are still some ups and downs, but my balance is generally good and I am usually walking quite well and can still run fairly well.

Is the CCSVI finally starting to show effects? Possibly. Not sure if the LDN has time to taken effect, and the D3 and other supplements might be helping, but the CCSVI has now had sufficient time to make an impact, so I am going to say that CCSVI just might be having a positive effect.

An edit the day after I wrote the above: As seems to happen each time after the 3rd day of Solumedrol, I am feeling jittery and have lots of numbness in my legs and some in my arms. Each time this happens I fear my disease is getting worse, but can see here in reading my past reports that this always happens after steriods and I will just have to suck it up for a week. I was/am hoping with the reduced dose of Solumedrol my withdrawl would be less intense but, at this point, it isn't!
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Re: CCSVI in two days

Postby FLJhawk » Tue May 22, 2012 12:55 pm

It was 11 weeks ago today I received CCSVI.

Well, picking up from last week's report, I am indeed feeling the effects of the Solumedrol. Even though we cut the dose back to 500 mg per day x 3 days, the side effects don't seem any less severe. I did speak with my neuro Sunday and he suggested stopping the treatment, which I didn't argue with! We have done 5 months now and while I would have agreed to another month of it, I am happy to be finished with it. He says we may start it again in another 6 months, depending upon what happens.

But, today, I am really dragging with a not-so-pleasant headache. I am still walking, but feel like I have to be careful when on my feet. There is some numbness in my wrists and my lower legs are a little tight and uncomfortable. But these symptoms that I attribute to MS are not really that bad, I am mostly just headachy, tired, a little unsteady and fatigued. There are four things that could be contributing:

1. I was outside a lot this weekend, in the heat, and exerted myself. Though I made lots of Vitamin D, the work was a bit exhausting for me and the Florida sun took a bit of a toll. I may still be feeling some of the effects of the exertion and heat.

2. The Solumedrol Blues. As I have said many times, the Solumedrol takes me down for a good week or more. It is difficult to sleep and a few days after the treatments it seems to make me wake up every hour to use the bathroom, and it makes me a little jittery and unsteady. So, Solumedrol-induced fatigue is still at play here.

3. I took Betaserone last night. I mentioned I went off it for 2 to 3 weeks, so I may be going through a new phase of getting used to it again. Part of my being so draggy today may be due to the drug. I think I am feeling slightly better later in the day than I did this morning, which would indicate part of this is due to Beta.

4. I had my old mercury fillings from 4 teeth removed yesterday. They had to numb me up a lot. I mean, a lot! My neck was hurting and I managed to bite my tongue and cheek in the process, so the headache might be a result of all dental work, biting and Novocaine. At least now the fillings are gone, though the chance remains some of the old filling dust was swallowed or inhaled. They did a good job, I think, of sucking everything up (they had the vacuum set to high and in one case set up a dam of some kind), but I may check into natural chelating methods to get rid of whatever Hg remains behind. Still not sure if the science proves there is a link with Hg fillings, but even bound up Hg can't be good, and I am trying to do whatever I reasonably can to improve my odds of beating this disease back. I am not expecting the removal to actually help me, but it is one less worry, plus my teeth look better now.

I usually end each report with an opinion of the success of CCSVI with my MS. Well, it is kind of pointless to do the week after Solumedrol! I hope that next week I will be where I was 2 weeks ago, and I hope that by having no more Solumedrol to interfere, things will settle down. It remains disconcerting to have some of these symptoms increase and to hope that it is primarily due to steroid recovery rather than disease progression.

Just one thing in my conversation with my neuro Sunday. He said that I had actual brain lesions. I don't recall seeing lesions in the scan - only a cloudy patch - but he said he remembered seeing a few lesions. Not a lot, but a few he said. He remembered seeing me in January and scaring him with my depression and rapid progression, but that I was doing well now. I said that most of what he saw was the result of depression and my being scared that I was about to end up functionally paralyzed, but that I also felt I was doing well, especially for an older man who had apparently just recently gotten the disease (noting that older males with late onset MS usually go straight to SP and quickly downhill from there). He said we caught it early and that I should continue to do well, and that the Beta should now be starting to provide me with protection. We will see.
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Re: CCSVI in two days

Postby bruce123 » Tue May 22, 2012 1:24 pm

FLJhawk wrote: How much is due to CCSVI, to the normal stages of MS, to LDN, to Betaserone (in my 3rd month of that when it starts to become effective), or even to diet, is simply unknowable. No one can use me in a study as I have tried so many different things!


My understanding of Betaseron may be different than yours. Betaseron is a DMD that is supposed to reduce the progression of your MS. This can be fewer relapses or fewer lesions or fewer symptoms BUT there is no way to know if it is doing anything for you. It has been proven effective though statistical analysis of many patients but it is impossible to know if it is helping any one individual since MS does not follow a predictable path.

I hope that Bataseron is helping you but I would not expect to feel any improvements as a result of taking it. At best it will slow your disease progression but you would not be able to know what your rate of progression would have been without the drug. It is a shot in the dark and a very expensive one at that. It also requires you to believe the research that was paid for by the pharmaceutical companies. That being said, my wife has been taking Betaseron for the past 6 years.

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