This Is MS Multiple Sclerosis Community: Knowledge & Support

I went to see my neurologist this week at the MS Clinic in Calgary, Alberta for my yearly visit and to get the results of my latest MRI. All looked good on my MRI and no new lesions or inflammatory action going on. What a relief that was!!! Than I decided to tell my neurologist about the CCSVI surgery that I had done in California by Dr.Arata in 2010. I was not sure what to expect here but I was pleasantly surprised. This neurologist wanted to know lots of details about the surgery and even wanted to know if I had the results from Dr.Arata with me. I said no since I left them at home since I honestly thought he wouldn`t be interested. Well I was wrong he obviously was `intrigued` by CCSVI and he even wants me to fax my results so he/she can read it. At know time did he/she criticize me for my decision to go ahead with this surgery. Shall we say this Neurologist was `open minded` on CCSVI.... Maybe folks the tied is turning here slightly in Canada???? We can only hope, right...................

Would you share your neuro's name? There are likely many others that do not have a neuro with the same type of open mindedness you have found.

What do we expect from neurologists? I think most of them are on the fence. They only prescribe approved treatments just like other doctors do. CCSVI is still non of them. Having a CCSVI operation is not like taking vitamin D or Omega-3. Operations are usually done as a last resort as they always have a risk, not to mention an operation of the veins very close to the brain. I am just wondering how many operations IRs have done in the brain region before they started doing CCSVI operations.

typically the CCSVI procedure is performed on malformed jugular valves at the base of the neck, near the collar bones

The upper part of the jugular seems to me quite close to the brain. My neurologist told me that there were several patients who had gone through the procedure abroad and then went to him when problems occured. Nerves are also close to the veins.

So, I feel that we want to achieve a result by CCSVI operation in our brain (as MS symptoms come from CNS problems), but we leave out those doctors who know the brain. I do not want to make a judgement in either way, but I see many neurologists have concerns about safty. I think we should heed them. Our original problem is MS.

Since nobody knows for certain what MS even really is, nobody knows what causes it. When I say, nobody, that includes neuros. CCSVI is a vascular problem. Saying that the lower jugular is "close to the brain" and so "we should heed the neuros" concerning problems in those veins is just plain wrong on both fronts. My teeth are even closer to my brain, but I'm not going to ask my neuros advice about a toothache.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Well said Ted. The "close to the brain" theory has about the same amount of credibility as the "MS is strictly an autoimmune disease" theory. The treatment for CCSVI is not brain surgery. One has to wonder just how familiar the neuros are with brain.

The hell with it. And where do you get treated for your MS, Ted? It seems that you are getting your meds from your dentist.

In my view the neuros are not treating MS they are prescribing drugs that supposedly treat the symptoms but that has been disproved in recent studies. The new drugs - Tysabri and Gilenya - are potentially far more dangerous that venous angioplasty so one has to question the benefit from a drug that could cause brain infection or permanently slowed heart beat vs the benefit from venous angioplasty. I'll take my chances with venous angioplasty and sincerely hope and pray that those taking Tysabri or Gilenya do not suffer from them.

A neurointerventional radiologist would be a good choice for blood vessel blockages actually in the brain.

A neurologist is a good choice if you want some nuvigil or provigil (good stuff) or have an inflammatory component to your MS and want disease modifying drugs. They are also good at tracking you through EDSS and MRIs as you decline.

For god's sake, can we really weigh what we are saying sometimes? We talk about intervention in veins in our brain, when the whole CCSVI hypothesis is not proven yet. Why not a brain surgery right away?



Whether CCSVI is a major factor of MS or not, MS affects our nerves and many of our symptoms related to nerve damage, so just because some of you have an aversion to neuros, it is still their table.




Just as endocrinologists do not treat diabetics. Doctors can only do what is available for them. Your neuro won't prescribe any drug that is not approved yet and as some of you indicated even approved drugs might have very serious side effects. This is what we would like to avoid with CCSVI operations. As we could see even here there are lots of complications after CCSVI operations and no long-term positive results yet.

Why do we think that anyone who raises some questions about CCSVI is against pwMS? Why many of you think of neuros as our enemy? Can they not have legitimate concerns about a procedure that messes around with veins which have a direct connection to our brain? Is the link between MS and CCSVI as strong as we originally thought? Many MS patients have no CCSVI and many healthy persons have CCSVI.

We should not mix our hopes with our believes.

I wish the neuros were as concerned about safety when they prescribe drugs that are proving to be ineffective and unsafe or when they prescribe chemo for MS sufferers etc. I could buy the "concerned with safety" argument if actions followed the words but they don't. I will still take by chances with venous angioplasty rather than Tysabri or Gilenya.

I think you can get one of those teach-yourself kits, probably from Amazon, but I bet eBay has used ones real cheap.

So bring your own condiments

Wouldn't want an implosive mixture.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

"beliefs."

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Progressive MS dx. 12/06. Currently on CAP for CPN: Wheldon protocol. LDN 4.5ml.