Hi, Jodi I have been following your journey since we met in 2008 and am wondering about something. I have started looking into Dr Sarno's mind body work /TMS and the curable app for my chronic migraines and other pains, it's helping me to an extent at least (early days). And while I realise your situation is very different, I wonder have you read or tried a mind body approach and if so what's your experience with it? Love from Australia
Hi Sandra, nice to see you here. Feels like forever ago that we met.
I have read Sarno's work, and a lot about pain sensitization and other mind-body work. I recommend Full Catastrophe Living as well, if you haven't yet read it.
With my specific mechanical issue, the CSF drips down out of the hole in my dura and irritates the tissues surrounding it. It tractions the nerves and causes low pressure. When I lay flat, the low pressure and a lot of the nerve pain goes away. So it is less of a sensitization issue and more of a mechanical one with consequences.
That said, I do think this kind of work is important, and helps lower the floor on the nervous system alongside other modalities like EMDR or somatic experiencing work. Meditation also can help in this regard, but I don't believe that the pain is necessarily due to sensitization like some practitioners claim. Yes, for some people their MRIs show things that ought to cause pain and they are not in pain, and others the reverse. It's highly individual. I've found, though, that some practitioners minimize the actual issues while shunting things toward "all in your head."
So a balance between the two is important. I couldn't have gotten to where I am now (functional to the extent my leak allows; living independently) without a serious focus on mind-body work. I think where it goes off the rails, though, is when people expect it to completely solve the issue. It may for some, but for others it may not. I'd say it's an important tool, but not a panacea.
Please keep keeping up the great work Jodi, despite the constant, chronic horror. My very warmest wishes from a warm, humid Singapore (you know Southeast Asian climate ;) as a fellow ex-law person (I didn't practise after law school). Thank you for sharing your story, it must be simultaneously nightmarish and mundane typing those words. The medical establishment can be shockingly inadequate, I'm so sorry you bore the brunt of it. I've had a little experience myself with a rare vascular disease and a rare procedure side effect that's killed my dreams of cycling at an elite level -- the days spent devouring medical journal articles and worse, the realisation that medical specialists don't know everything. I do wonder though, if perhaps private healthcare in Singapore, insured by a private insurer (ie get a job here,) can help -- if the medical expertise is there, you'll have zero wait time and perfect access to any facilities/care.
hi Dione, apologies -- I missed this comment until now. I appreciate your kindness, and I'm so sorry to hear that that the complications from your procedure have forced a change in your plans and hopes.
If you were suggesting private healthcare in Sg for me: I have heard from a few leak patients in Singapore, and the issue there does seem to be similar; there's an outdated belief that lumbar puncture leaks are 'self limiting' and would not persist after a certain amount of time. Seems to be the challenge everywhere. I hope the education catches up with us patients soon.
I hope you have a good rest of the weekend and thank you for reading!
As Always..
Thank You for your insights and Great responses to those questions we'd rather not respond to. Hoping your May is Spectacular
Thank you for reading Darren! I'm glad you enjoyed it. All the best to you as well.
Hi, Jodi I have been following your journey since we met in 2008 and am wondering about something. I have started looking into Dr Sarno's mind body work /TMS and the curable app for my chronic migraines and other pains, it's helping me to an extent at least (early days). And while I realise your situation is very different, I wonder have you read or tried a mind body approach and if so what's your experience with it? Love from Australia
Hi Sandra, nice to see you here. Feels like forever ago that we met.
I have read Sarno's work, and a lot about pain sensitization and other mind-body work. I recommend Full Catastrophe Living as well, if you haven't yet read it.
With my specific mechanical issue, the CSF drips down out of the hole in my dura and irritates the tissues surrounding it. It tractions the nerves and causes low pressure. When I lay flat, the low pressure and a lot of the nerve pain goes away. So it is less of a sensitization issue and more of a mechanical one with consequences.
That said, I do think this kind of work is important, and helps lower the floor on the nervous system alongside other modalities like EMDR or somatic experiencing work. Meditation also can help in this regard, but I don't believe that the pain is necessarily due to sensitization like some practitioners claim. Yes, for some people their MRIs show things that ought to cause pain and they are not in pain, and others the reverse. It's highly individual. I've found, though, that some practitioners minimize the actual issues while shunting things toward "all in your head."
So a balance between the two is important. I couldn't have gotten to where I am now (functional to the extent my leak allows; living independently) without a serious focus on mind-body work. I think where it goes off the rails, though, is when people expect it to completely solve the issue. It may for some, but for others it may not. I'd say it's an important tool, but not a panacea.
(That's just my 2 cents, though!)
Please keep keeping up the great work Jodi, despite the constant, chronic horror. My very warmest wishes from a warm, humid Singapore (you know Southeast Asian climate ;) as a fellow ex-law person (I didn't practise after law school). Thank you for sharing your story, it must be simultaneously nightmarish and mundane typing those words. The medical establishment can be shockingly inadequate, I'm so sorry you bore the brunt of it. I've had a little experience myself with a rare vascular disease and a rare procedure side effect that's killed my dreams of cycling at an elite level -- the days spent devouring medical journal articles and worse, the realisation that medical specialists don't know everything. I do wonder though, if perhaps private healthcare in Singapore, insured by a private insurer (ie get a job here,) can help -- if the medical expertise is there, you'll have zero wait time and perfect access to any facilities/care.
hi Dione, apologies -- I missed this comment until now. I appreciate your kindness, and I'm so sorry to hear that that the complications from your procedure have forced a change in your plans and hopes.
If you were suggesting private healthcare in Sg for me: I have heard from a few leak patients in Singapore, and the issue there does seem to be similar; there's an outdated belief that lumbar puncture leaks are 'self limiting' and would not persist after a certain amount of time. Seems to be the challenge everywhere. I hope the education catches up with us patients soon.
I hope you have a good rest of the weekend and thank you for reading!