Posted 07 January 2010 - 04:54 AM
I am glad your surgery is helping your problem. I hope things continue to get better.
Posted 07 January 2010 - 11:04 AM
Thanks Buttons for your reply, pleased to hear that your implant is helping. Prof. Plumb gave me the same sort of info about what area of medicine it comes under and that is where I have been asking questions. The Colorectal Surgeon who did my previous surgeries never mentioned it as an option, my current Gastro man who covers the whole area from mouth to end product never mentioned it, I currently have a question in with the Doctor who did the Manometry but so far no answer. My current plan for today is to phone the Auckland District Health Board offices and see if anybody can come up with more than just - Uhhhhhhh??
I started to think I was barking up the wrong tree in my effort to find information and that I should be asking for Neuro surgery. Anyway I will keep on asking.
Will keep you all posted.
Posted 07 January 2010 - 05:20 PM
I just read Willow's post about no Scleroderma Specialists in Seattle - try living in a country with no sclero specialists anywhere, and a dearth of people who even know what you are talking about!
Anyway I did have a little victory today, I finally found a site which listed Sacral Nerve Stimulation practitioners in Australia. LOADS OF THEM! So my task for next week is to ask my general practitioner what to do as the next step.
I expect the best thing will be to ask the Gastro Specialist to act as intermediary. We shall see.
Anyway I am feeling quite uplifted now. Australia is not too far away and I have lots of cousins living in Sydney. Everybody's information, my general practitioner told me the way to find out about various procedures is to do an internet search on a Cochrane Review. So for example I typed in Cochrane Review of Sacral Nerve.... . Hot hugs again Judy T
Posted 15 January 2010 - 11:12 AM
This little joke says it all!
All the organs of the human body were having a meeting, trying to decide who should be the one in charge.
"I should be in charge," said the brain, "Because I run all the body's systems, so without me nothing would happen."
"I should be in charge," said the blood, "Because I circulate oxygen all over so without me you'd all waste away."
"I should be in charge," said the stomach, "Because I process food and give all of you energy."
"I should be in charge," said the legs, "because I carry the body wherever it needs to go."
"I should be in charge," said the eyes, "Because I allow the body to see where it goes."
"I should be in charge," said the rectum, "Because I'm responsible for waste removal."
All the other body parts laughed at the rectum and insulted him, so in a huff, he shut down tight. Within a few days, the brain had a terrible headache, the stomach was bloated, the legs got wobbly, the eyes got watery, and the blood was toxic. They all decided that the rectum should be the boss!
Posted 15 January 2010 - 05:42 PM
If any of you have been reading my other posts you will know that the past few days I have got hung up on my heart problems and the poor old rectum has been moved to the back benches
of my mind.
I did mention SNS to my Gastro man on the phone and he said it is done here but ONLY for people who have normal anatomy and by no stretch of the imagination could that part of my anatomy be described as 'normal'. However, since he is also the person who suggested I should FORGET (as if one ever could) about the Pulmonary Hypertension I am inclined to take that comment with a very large pinch of salt and continue my enquiries. For those of you who don't know, the Cardiologist said yesterday that the PH is very likely a consequence of Mitral Stenosis and not necessarily Scleroderma SO if I HAD just forgotten about it who knows what sort of a pickle I might be in later on.
What I am interested in now is whether those of you with SNS installed could describe your sphincters as 'normal'. Surely if one has sclero affecting the rectum and sphincters and need 'help' then a'normal' anatomy is about the last thing you would be in possession of. Not to mention of course one's sanity!!!!!!!!!!!!!!!!
Maybe I am wrong - will look forward to hearing what you all have to report.
It is still HOT hugs from here to there.
My brother reports from Sweden that it is -40C where he lives!!!!!
I sent him some HOT hugs too.
Posted 16 January 2010 - 06:03 AM
Thank goodness I don't have gut involvement at present ( touch wood!! ) Here's a sympathetic for everyone who does!
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Posted 18 January 2010 - 03:14 PM
My sanity went ages ago but thinking about it, it may have never been there in the first place!! After the implant was fitted to me the hospital ran tests with it turned on and with it turned off. There was a significant increase in the muscle strength of my anus with the implant turned on. I doubt if I was normal in that area in the first place because the muscles were being affected by scleroderma. I hope this helps.