Chantelle Baxter's CRPS Battle is the title of a recent article in The Age, April 17th 2017
http://www.theage.com.au/victoria/someone-was-melting-the-bones-inside-my-legs-chantelle-baxter-battles-rare-disease-20170416-gvly65.html
Since this article was published and found its way into the social media, I have lost count of how many well-meaning friends and acquaintances have emailed me asking if I had seen it and if any of the treatments written about in this article could be relevant to me. Today I am not long home after a week in hospital having a Ketamine infusion, I am tired and I would rather be in my studio drawing than writing about the article in the Age and Chantelle Baxter’s Blog
https://www.facebook.com/notes/chantelle-baxter/ive-just-been-diagnosed-with-a-rare-progressive-neurological-disorder-nicknamed-/10154169801376621/
where she states how much better off she is being treated in the USA compared to Australia.
“The lucky part is that I’m in the US, so there are more treatment options here. I couldn’t even get a diagnosis in Australia after 1.5 months of searching – yet a US doctor diagnosed me within a week. In Australia your options are limited to a shit tonne of drugs, nerve blocks and ketamine infusions.
If there IS a place to get CRPS, it’s here. I’ve tried two non invasive treatments at the moment (still in the middle of my second one) – and my next stop (on my medical tour of the world) will be Italy – where we’re trying a drug called Neridronate Acid. They’ve used it to treat CRPS there for years. Just has a few potentially major side effects like ‘osteonecrosis of the jaw’ – AKA DEATH TO YOUR JAW BONE. And getting the infusions is apparently a little visit to hell for 2 weeks because of all the side effects.
But for many people it gives long term relief – some even get remission!”
Let’s get a few facts straight:
Getting a diagnosis is not easy in any country, it largely depends on your symptoms and finding a pain management specialist who is knowledgeable about CRPS. I was not diagnosed for 4 years but once I sourced a good pain management specialist I did not look back in terms of being in a much better place mentally and physically. Anyone fortunate enough to have private insurance health insurance in Australia has access to some of the world’s best pain management specialists and currently effective treatments. You can, if CRPS is diagnosed and treated early, go into remission in Australia without having to travel to the US!
Yes the pain is indescribable, it takes over your life. I have had suicidal thoughts in the early years before finding the right pain management specialist and other professionals knowledgeable about CRPS. Whatever country you are in there is no proven single medical treatment that will ‘cure’ CRPS and it is a well-established fact that treatments need to include a combination of therapies. For me it is my spinal cord stimulator -neuromodulation (Ms Baxter fails to mention neuromodulation to the short list of therapies available in Australia), regular Ketamine infusions, physiotherapy, occupational therapy and psychologists when needed; my small support group of others with CRPS is also invaluable. I know of no one who has been ‘cured’ of CRPS but I do know a few people who have gone into remission following early diagnosis and treatment.
Neridronate Acid. Is this the cure for CRPS?
http://www.blbchronicpain.co.uk/news/is-this-the-cure-for-crps/
17th October 2016 | Written by Libby Parfitt
If you are interested in finding about more about the realities of this new drug that is still undergoing clinical trials the link above will take you to an excellent common sense article that discusses the realities and limitations of this new drug. Here is are two excerpts from this article written by Libby Parfitt:
“Secondly, that startling study, the one with the 100% success rate? Well, that only included patients who were in their first few months of CRPS, and it only looked at those with CRPS type 1. In this type of CRPS there is no discernible injury to the nerve. If you have a nerve injury and develop CRPS, it is classed as type 2.”
“Sadly though, I don’t think it’s a total cure for CRPS just yet. For anyone in the first few months of CRPS Type 1 with significant disposable income, get on the phone to Italy right now. However, if you’re in the early stages you have a pretty good chance of remission anyway. And more crucially, most of us don’t get diagnosed in the first few months. CRPS is rare and largely unknown and most go through a long period of ruling out other causes for the pain before anyone even mentions this disease to them.”
It is interesting how sensationalist claims of a cure in the news can go a long way to distorting the truth and compelling me to spend my morning justifying why my pain management and I are very much on top of the latest widely publicised treatments and ‘cures’ including medical cannabis.
Like all professions there are good and bad in all areas of medicine and this is a reality not just in Australia but worldwide. I am fortunate to have found one of the best pain management clinics in the country www.painmatrix.com.au
Despite my scepticism about the latest ‘magic cures’ it will be interesting to follow up on the various people who have travelled overseas for treatments and I hope they find some relief from this life altering disease, we are all on the same road when it comes to hope and being prepared to go to great lengths to find relief.
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