CCSVI vs nerve pain

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

CCSVI vs nerve pain

Postby Filmmaker » Tue Apr 12, 2011 7:15 am

Can anybody explain to me how CCSVI may cause nerve pain or demylenation and how is the procedure supposed to help nerves get normal again?....
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Postby MarkW » Tue Apr 12, 2011 9:30 am

The exact mechanisms of neuropathic pain in MS are still being researched. I have not heard anyone doing CCSVI and nerve pain research. I would dis-believe anyone who answered your question.

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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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Postby bruce123 » Tue Apr 12, 2011 10:51 am

I can't answer your question but I can tell you that my wife has terrible recurring nerve pain in one arm. This pain comes on several times per day and lasts 30 - 60 minutes. A number of neurological specialists have failed to help. They all say that this type of pain, that comes and goes several times per day, is not like anything they have seen in MS.

My wife was treated for CCSVI in December and the pain disappeared! She was pain free for 2 glorious months. The pain has now returned due to restenosis.

Bruce.
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Postby WeWillBeatMS » Wed Apr 13, 2011 2:17 pm

I am really hoping to get relief from nerve pain, among other symptoms, with my procedure next month in brooklyn. I take Cymbalta for nerve pain now but it messes with my head.

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Postby civickiller » Wed Apr 13, 2011 3:19 pm

Have u tried gabapentin for nerve pain?
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Postby WeWillBeatMS » Wed Apr 13, 2011 5:32 pm

I tried Lyrica but not gabapentin. It didn't work for me. My worst (by far) pain comes at night when I am trying to sleep. For about 1.5 years my pain at night was so bad it felt like I was on fire and just all around dying. It was horrible. I tried all kinds of medicines both OTC and prescription. None of them worked. Then about 6 months ago my current neuro who prescribes Tysabri for me suggested I try Cymbalta and it was the first time I slept through the night in a long time. Now it doesn't seem to work as well and I'm really looking forward to getting the liberation treatment.

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Postby Jugular » Wed Apr 13, 2011 9:31 pm

Relief from my own hellish brand of nerve pain was one of my hoped for results from seeking CCSVI treatment. Sadly, there was only a marginal lessening of it. (Happily, it has had a great effect on my accumulated disability.) One night I was up looking for answers and stumbled upon this recent study on the effectiveness of fish oil to treat nerve pain.

http://futureofmedicine.ca/images/Clin_J_Pain.pdf

I've been on the regime recommended by the doctors for two weeks and have found it to be as effective (or ineffective) as Lyrica or Nortriptyline. It has some good side effects too, such as lowered bad and raised good cholesterol, lowered tryglycerides, blood thinning etc.

I know I'm late to the fish oil party, but it seems to have helped me a lot -not just with my nerve pain, but also with my rehab after CCSVI treatment.
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Postby HappyPoet » Thu Apr 14, 2011 9:39 am

A neurologist is NOT the best doctor to help with nerve pain. Even so-called MS specialists lack the knowledge, skills, and experience required to properly and thoroughly deal with nerve pain.

Having a consultation with a "pain management" doctor, usually an anesthesiologist with advanced training, is a MUST -- ask for a referral; most insurances do cover pain management (and second opinions of pain management doctors).

For many types of nerve pain, there are procedures available, such as pain control injections, Baclofen/pain pumps, and more. While a pain management specialist can tell a patient if *medically necessary* prescription narcotics will help/stop the patient's pain, most pain management doctors won't prescribe them and will instead send the patient back to their primary doctor for meds such as Oxycontin, Oxycodone, methadone, morphine, etc.

Bruce, get your wife to a pain management specialist ASAP; one shot in her arm will take away her pain, and the effects from the pain control med(s) in the injection can last for several months.

Best of luck everyone.
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Postby bruce123 » Thu Apr 14, 2011 11:58 am

HappyPoet,

What type of "shot in the arm" are you referring to?

My wife has been going to a pain specialist for a few years. She has been on many drugs, including many anti-seizure drugs which have been proven to help neuropathic pain, as well as a few narcotic-based drugs such a Oxycodone. Both the pain specialist and the neurologist have been trying to help. She has even used the nasal spray that is derived from marijuana (Stadol). I understand it is not available in the US. Nothing has helped much. I just found a new family of drugs know as Duloxetine. We will ask about this one on our next visit to the doctor.

Bruce.
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Postby HappyPoet » Fri Apr 15, 2011 5:38 am

Hi Bruce,

I'm so sorry your wife is suffering with such rotten arm pain. I had severe pain in my upper left arm one time that was sooooooooo bad, I wanted to chop off my arm. So I went to my primary for a referral to a pain management doctor, but my primary was able to give an injection in my arm himself. The injection contained a cocktail of meds, and I'll call his office today to ask what the meds were.

By the time the shot wore off, my arm pain had fully remitted, but he would have kept giving me the shots had I still needed them. My husband sees a pain management doctor every couple of months for shots in his shoulder for pain related to an old work injury.

Ask your doctors, "Can you give my wife an injection of pain control medication directly into her arm?" Their answers may lead you to try to find a new pain management doctor for her.

I wish her the best of luck -- nerve pain can be so debilitating!

Edit: My primary's nurse said the injection included an anesthetic and cortisone. Also, my husband said his PM doctor calls his injections "trigger point injections."

Edit 2: For my MS Hug pain, I use Lyrica which has saved/is saving my life.
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