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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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ozarkcanoer
PostPosted: Sat Apr 30, 2011 7:33 pm 
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I had the CCSVI procedure last August 17 in Baltimore. I had to relief at all right away but a couple of weeks post procedure my pain and fatigue lifted and I was so happy. From September until November I was "normal". In November I started getting headaches again but by February things were good again. I had a follow-up ultrasound here in St Louis that showed my left IJV stent 80% occluded. So I had a follow-up procedure March 16. The IR then discovered that my left stent was completely occluded with scar tissue but he did reballoon my right IJV and azygos. Since then I have had daily SEVERE headaches and fatigue. I am trying to see if I can get my left stent cleared somehow. I probably won't be ble to see my local IR until June.

Has anyone else had such a "relapse" after CCSVI procedure and/or an occluded stent ? I am in so much daily pain it is hard to take. My local IR and professor of medicine did tell me that to clear the stent is a much more difficult task than the original procedure.

Any thoughts, anybody ???
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jimmylegs
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PostPosted: Sun May 01, 2011 6:16 am 
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i am not sure this would help post occlusion, but are you taking any magnesium on a daily basis?

http://www.anesthesia-analgesia.org/con ... 3.full.pdf
The Effect of Intravenously Administered Magnesium on Platelet Function in Patients After Cardiac Surgery

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jimmylegs
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PostPosted: Sun May 01, 2011 6:26 am 
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NO citations to peer reviewed lit but this rings true with me

Quote:
Inflammation is a response from your immune system in response to an irritant. For example, if you sprain your ankle, your immune system creates a protein called a Circulating Immune Complex (CIC for short). The CIC travels down to the injured ankle and causes pain and swelling. The pain you feel is to inform you of the injury or damage. And the swelling is protective as it prevents you from moving it and causing more irritation. This is also your body’s way of running to the problem with fresh blood, antibodies and vital cells in order to begin healing and repairing the damage.

Then what normally happens is our bodies produce proteolytic enzymes which counteract the inflammation, and things return to normal. That’s why a sprained ankle as a young child heals within a few weeks at most, but can take six weeks or more for an adult of say 45. The problem is, after around age 25, our production of these enzymes drops off almost completely so there is nothing to tell the body to stop the inflammation. These enzymes are also responsible for cleaning the blood, fighting off viral and bacterial infections and breaking down excess fibrin (scar tissue). Most if not all of these enzymes are mediated by magnesium meaning as magnesium levels drop off so do the activities of these crucial biological magnesium sensitive enzymes.

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bluesky63
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PostPosted: Sun May 01, 2011 8:39 am 
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It's hard to believe there would be no way at all you could get in till June. Having lived with severe headaches, I send you my deepest sympathy. My first procedure made a huge dent in the pain, and I wouldn't wish that pain on anyone. Are you on a cancellation list? Can't they do anything at all? It sounds like a complication. Not to be scary, but what if something dire happened and they waited till June? Isn't there a backup person? I mean really, nothing for two whole months????
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Cece
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PostPosted: Sun May 01, 2011 8:53 am 
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I know of someone else who had severe migraine-type headaches commencing the evening of her second CCSVI procedure.

What could cause this?

I am so sorry to hear that you are in this much pain. It wasn't a result of the left stent occluding, it was specifically after the procedure to clear the right stent?

Are there pain meds or migraine meds that might make a difference?

Many possible causes of headache and information here:
www.ninds.nih.gov/disorders/headache/de ... adache.htm

My guess, because this is the second case of this, is that something to do with the procedure is causing this. Some injury, perhaps when CCSVI is severe and one side is occluded and the other side is being ballooned? I wish there were answers.
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magoo
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PostPosted: Sun May 01, 2011 9:28 am 
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OC,
As I went through my second procedure, when the balloon inflated and blocked my jugular, I experienced a terrible headache. It was then relieved when the balloon was deflated. The doctor was amazed at the correlation of my pain and the blocking of the blood flow.
I have fought these headaches and I feel for you. I think the blocked left jugular could account for the pain.
Also, I found this helpful from Jimmylegs:
"Inflammation is a response from your immune system in response to an irritant. For example, if you sprain your ankle, your immune system creates a protein called a Circulating Immune Complex (CIC for short). The CIC travels down to the injured ankle and causes pain and swelling. The pain you feel is to inform you of the injury or damage."
Your body is telling you something. I hope you can get help soon. June is a long time to wait. Best of luck.

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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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ozarkcanoer
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PostPosted: Sun May 01, 2011 2:05 pm 
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Thanks for all your suggestions !! Everyone who has had bad headaches can understand. I am taking Vicodin and/or Fioricet and Xanax (yep, I'm addicted) for my pain and distress. My St Louis IR (who is tremendous BTW) is absolutely wonderful, but I can only talk to his nurse/assistant. The June appointment will be for a consultation about unblocking my left IJV. He is doing CCSVI ballooning but is not working with stents. My Baltimore IR, Dr Haskal, is just too far away for me to have a more serious procedure.

Dr Haskal told me that this scar tissue can't be pierced with a diamond tipped drill !!!!! I know someone else who has this same problem and she is also looking for a solution (I don't know if she has headaches but she has an occluded stent).

Magoo, your experience sounds similar to me. I was actually feeling pretty good before my second procedure. Now I am drowning in pain drugs. My hubby just told me he has magnesium. I'll try that. !!!!

ozarkcanoer
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jimmylegs
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PostPosted: Sun May 01, 2011 2:12 pm 
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which form of magnesium is it oz?

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com
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ozarkcanoer
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PostPosted: Sun May 01, 2011 2:20 pm 
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Cece,

You asked if the pain started right after the procedure. It wasn't right after. The day after the procedure we drove home from Baltimore to St Louis. Things seemed OK. But after I got home the headaches started. I also had the return of my burning mouth (ugh!!!!). My tongue feels like it is coated in tobasco sauce, LOL.

ozarkcanoer
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jimmylegs
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PostPosted: Sun May 01, 2011 3:20 pm 
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also, FYI:

Deficiencies of B vitamins 1, 2, 6, and 12, as well as zinc[54] , folate and iron, have been suggested as causes of secondary burning mouth syndrome (BMS), either from direct neurologic damage or in relation to anemia.

54.Cho GS, Han MW, Lee B, Roh JL, Choi SH, Cho KJ, et al. Zinc deficiency may be a cause of burning mouth syndrome as zinc replacement therapy has therapeutic effects. J Oral Pathol Med. Jul 2 2010;[Medline].

B-complex (say, B50-complex 1x/d) and magnesium make a good combo. And MS patients are low in zinc as a general rule so if you're not taking any, consider 50mg/d of that too :)

HTH

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com
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ozarkcanoer
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PostPosted: Sun May 01, 2011 4:56 pm 
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Thank you Jimmylegs !!!! You sure know your vitamins and minerals. I take a multivitamin everyday.

ozarkcanoer
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jimmylegs
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PostPosted: Sun May 01, 2011 5:13 pm 
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no probs!

fyi, sometimes one-a-day type multis just aren't quite enough - for example, how many milligrams of b1 are in your daily multivit product?

does it have minerals as well as vitamins?

also did you happen to find out what form of magnesium your hubby has on hand?

JL

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com
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mavis
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PostPosted: Sun May 01, 2011 5:47 pm 
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Sorry to hear about the headaches. Did you check Dr. McGuckin? He is out of Seattle, but visits other Vascular Access Centres in other cities. He has experience with occluded stents and uses RFA (Radio Frequency Ablation) technique. There is some good info on Facebook.

All the best.
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eric593
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PostPosted: Sun May 01, 2011 6:42 pm 
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Have you had an ultrasound to check for thromboses? If you had headaches before any angio, alleviated by angio but returning and finding an occluded stent, then angio of your other IJV and azygous, and a return of even more severe headaches...it sounds like your other IJV may have impaired blood flow now too.

If it were me, I would get an u/s to at least rule out a clot on the other side.
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ozarkcanoer
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PostPosted: Mon May 02, 2011 10:34 am 
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At my last US test about a month ago my right IJV was doing beautifully !!! I have no reason to suspect my right IJV or my azygos since Dr Haskal reinpected them and treated them in March.

Jimmylegs... The magnesium is NatureMade 250 mg.

ozarkcanoer
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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