3 months post-liberation of skincoll!

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

3 months post-liberation of skincoll!

Postby skincoll » Thu Sep 09, 2010 3:37 pm

Hi guys.

I had the op done in Katowice on 9th June and decided not to post anything, or even visit this site for 3 months, so I could get on with my healing and give a more meaningful account of any changes, after I could be sure of them.

I'll try not to make this post too long and boring too!

I had a blocked left jugular that I got balooned open by the Euromedic (Simka) team. I was diagnosed with RRMS in 2008 and had experienced constant numbness/tingling of the hands, manual dexterity problems, lower arms and feet, other temporary random tingling, vision and speech impairment (in 2000), fatigue, muscle weakness, balance issues and foot-drop etc. etc.

After the procedure I felt some cognitive improvements over the next two days, and some return of energy, although I didn't feel it was a roaring success. However, my sensation then started to improve over the next couple of weeks, along with most of my other symptoms - I was on the mend! This was all great until about a month after the procedure, at which point I felt symptoms returning, eventually to the point of returning to the way they were prior to the operation. I was at this stage pretty disappointed, and was beginning to think the procedure was a bit of a gimmick, and that I'd been conned. Fatigue and the MS feeling had got me in its grips once again.

But... and this is the weird part... I was helping my girlfriend out in the garden a few days later (this is about 5 weeks post-op) and began digging our vegetable patch angrily even though I was tired (partly because of how frustrated I was with how rubbish I was feeling). After a few seconds I felt a release of pressure and a warm feeling in the left side of my neck and down into my shoulder/chest - it was immediately clear to me that I had 'done something' to the vein. Over the next few days I felt clearer in the head, could concentrate much better on conversations, and my hands were sweating for the first time in ages. My other symptoms were again nowhere to be seen. Now this I felt was a breakthrough for me. I began to start thinking that if I could manage to keep the blood flowing though the affected area, this would 'force' the vein to stay open, which seemed to be the solution to my problems.

Now I haven't had any follow up scans to confirm what's going on, but I have been exercising the left shoulder a lot, and have been able to do a lot of cycling and press ups to keep things going. As I type this I am happy to report that I'm doing really well, with only very mild pins and needles in my fingers (much less than before) as noticeable symptoms. I regularly feel the affected area of my neck/shoulder give off a not unpleasant warm feeling and have noticed the odd crackling sensation in my left ear, similar to what I experienced when I was on the table having the balooning done. What's also strange is I have started to feel similar sensations on the right side too, I hope because pressures etc. are balancing out.

Anyway, for anyone waiting for this operation, my personal opinion is that the it is DEFINITELY worth getting done, but as you've read, an odd series of improvements, set-backs, then odd sensations and then more improvements has made it a bit of a drama. I can also say that in my experience things have actually reversed, not just stopped progressing - for example I can easily do things with my hands that I struggled with before, and I'm much physically fitter. Now I feel like I won't go backwards again, even though I still feel the dying embers of MS in my fingers as a reminder.

I said this post wasn't going to be too long. Oh well, I tried!

Love and best wishes to you all!
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Postby Trish317 » Thu Sep 09, 2010 3:50 pm

Thank you for sharing all that. My darling man will be having the procedure this coming Tuesday. Although he has PPMS, not RRMS, everything you said gave me a big boost of hope and optimism.

Sending you positive thoughts for continued healing and health.
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Postby Fernie12 » Thu Sep 09, 2010 4:27 pm

Nice! Thanks for letting us know - the taking 3 months away from TIMS and stuff is probably a really good strategy :-) To continued improvements!
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Postby CRHInv » Thu Sep 09, 2010 8:47 pm

I am so glad to hear things are going well. I am also big on exercise and keeping the blood moving. I know it makes me feel better.
Thanks for taking the time to share your experiences. It is really interesting.
Take care and keep us posted!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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great

Postby blossom » Thu Sep 09, 2010 9:05 pm

great news. i'm so happy for you. your story reminds me to never say never.
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Postby Rokkit » Fri Sep 10, 2010 7:09 am

That's a crazy story. So I guess you re-angio'd yourself either with blood pressure or some kind of muscle contraction in your neck? Very interesting.
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Postby magoo » Fri Sep 10, 2010 8:13 am

Thanks for sharing! Yours is a wonderful story. I hope you continue to heal and improve.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby bruce123 » Fri Sep 10, 2010 8:57 am

Thanks for posting.

I have not read of anyone else having this happen. It is fascinating. Another example of how much more needs to be understood.

A few years back our neuroligist was trying to provide encouragment. He said" the drugs your on now will not be the drugs you'll be taking in 5 or 10 years". He was sugesting that there will be great advances in the treatment of MS over the coming years and that we should remain optomistic. Well he was right but I don't think treating CCSVI was what he had in mind.

It seems that only about 33% of those treated experience dramatic improvements but I believe that this is what will be changing over the next few years.

Bruce.
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Postby skincoll » Fri Sep 10, 2010 9:30 am

Thank you for your kind comments. I know not everyone has had a similar, or as positive an experience as me, but I have tried to give as accurate an account as I can. In light of what has happened, I now visualise my left jugular as a garden hose that has had a kink in it, which needs to be pumped hard to keep it flowing straight - as it may still have a tendency to revert to its original position. So for me, no more abstract ideas about autoimmunity, heavy metals inflaming my myelin sheath, or candida boring holes in my gut. I'm keeping it nice and simple, which makes it much easier to think of and stay positive about.
Love, peace, over, out.
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Postby eve » Fri Sep 10, 2010 10:04 am

Skincoll, congratulations on your treatment. I found your post very interesting as I have experienced something simular but I've been very hesitant to post about it as I didn't know what to make of it.

I have not been liberated but I have had very good improvement since starting Niacin (vit B3, dilator) and asperin since january. For instance I can move all my toes now which I couldnt for 8 years. This as background info.

The thing is that a while back my L'Hermitte which I have on and off for years had returned. I decided to up my Niacin intake to twice a day.
Niacin when taken in high dosage will give you a 'flush' it dilates your veins and your blood rushes through the whole system in ca 20 minutes.

I did my workout during the flush, as my theory was indeed to 'up' the pressure and get the system flushed out, and while I was exercising I felt my L'hermitte fade away! This is a few hours after it started and normally I'd have it for months/years. Afterwards it was not completely gone but way less. I took Niacin twice a day for 2 more days and the L'hermitte was gone and has not returned since.

Now I do not know what to make of it but your experience sounds somewhat alike. Maybe it will help.

I used to own an aquarium and indeed I compare my jugulars to the gardenhose that I used to clean it out.

Sometimes it would get clogged with little stones or mud. Then you had to wiggle it about (stretch and exercise) and increase the pressure (Niacin) to get it moving again. Funny you think along the same lines. :)
Last edited by eve on Sat Sep 11, 2010 3:19 am, edited 2 times in total.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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niacin

Postby blossom » Fri Sep 10, 2010 2:26 pm

eye, would you mind telling what type of niacin and the mg. you take twice a day? thanks
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Postby eve » Fri Sep 10, 2010 2:54 pm

Hi Blossom, there are 3 types of Niacin, the regular, time-released and flush free. You will need to take the regular kind to get the flush, which dilates your bloodvessels. Solgar sells them, 100 tablets of 100mg for about 8 euro's here.

Dosage is difficult in the beginning as every person has a different tolerance level. Some will experience their first flush at 50 mg, some at 100, some might not even get one with 500 mg. So this is something you need to find out for yourself by starting slowly with low dosage. It's working it out as you go along.

The advice I got was to start with 25 mg 3x a day and up this with 25 mg each day untill you flush.

I had the first one at 100 mg and it was quite strange. You will feel hot and your skin might turn blotchy red (I mean lobster ! ) Also you can get real itchy. This will all pass within 20-30 minutes. In the beginning you might feel tired and cold after the flush. You will tolerate it better after you've taken it a while and your flush will go down to a slight blush and a little heat. Also drinking a cold drink during the flush will take the edge off.

In the beginning take it after your meal as you will have a stronger flush on an empty stomach. You will find it will become more difficult to attain the flush after a while, you will need to experiment with upping the dosage and whether to have it after a meal or not.

After a number of weeks you will find you will have to take large dosage to flush. You will need to stop for 1-2 weeks and then start with a low dosage again.

You can chose to do it up to 3 x a day but for myself I found that I prefer it most in the morning (on an empty stomach so I can take low dosage) and sometimes before I go to bed. I take anywhere from 100-700 mg depending on how my tolerance levels are.

From studies I have understood that it can be quit safely used up to 1500 mg a day, they use it therapeutically in such dosage. I prefer not to go above 700 mg max a day (either in 1 or 2 dosage)

Sorry for the long story but if you would just start taking Niacin and you are unaware of the flush the first time could really scare you!
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby paulmur » Fri Sep 10, 2010 3:01 pm

Hi. Great News!

My MS profile is very similar to yours although I have not had the procedure.
But! My experience is this.. and funny it should have been while gardening too.. actually building a garden. I was working with my nephew driving in stakes with a sledge hammer into landscaping ties. It was VERY hard work. After, I felt tired but I realized it wasn't like fatigued. I didn't really feel that MS fatigue nor did I feel any of the other symptoms. I also felt clear headed. I've noticed this before but this was becoming a trend. My symptoms do re-appear but I have to think there is something to this. I'm looking forward to getting the procedure. I really think it will work.
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Postby skincoll » Fri Sep 10, 2010 4:01 pm

That's bloody interesting what Eve said. I do take lots of supplements and take a b-complex pill (with niacin) once a day - I have also noticed that I have had hot flushes (as you say lobster red, embarrassing really!) after taking my supplements all at once on an empty stomach, but never knew what it was that which was making me go red. I guess it's that one then. Wow. I will continue to take this going by what you've written. But not on an empty stomach. It's good to talk eh? lol Nice one Eve!
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Postby Johnson » Fri Sep 10, 2010 6:44 pm

Hi skincoll,

I think you took all of my improvements with you!

I'm glad you are feeling good, man. I will e-mail one of these days... lectus interruptus in Poland.

To mitigate the flushing with B3/niacin, take it at the beginning or early during a meal. You can also build a tolerance to the flushing. My wife was doing 3,000 mg (on an empty stomach) for a while, but at that level, the flush is way too intense. We are used to 500 mg 2x/day now. I am still progressing though, so your mileage may vary - as it will with all non-invasive treatments. Even with venoplasty, your result will not be predictable.

B3 keeps the prostate healthy too...
My name is not really Johnson. MSed up since 1993
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