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Determined

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Determined last won the day on January 6 2014

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    Chi Kung, (as taught by Wong Kiew Kit), walking, cooking, relaxing....

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  1. Dear all, NICE has reviewed ETS surgery and there is now a public consultation on their findings. If you have the time and energy to have a look at this and make any relevant points please find the relevant links below. http://guidance.nice...5/DraftGuidance - Primary HHydrosis http://guidance.nice...8/DraftGuidance - Facial Blushing Best wishes, Mark
  2. Dear All, NICE (A UK organization) will soon be launching a public consultation for ETS surgery. Both for facial blushing AND primary hyperhidrosis of the upper limb A 4 week consultation starts Weds 23rd October, closes Weds 20th November. NICE are reviewing ETS in response to concerns raised by Post ETS patients. This is a very rare opportunity to register your experience, so the facts are there for others and changes can be made. I would like to encourage anyone who has undergone ETS - in any country - to feedback their experience - let others know! The following are suggestions of how to briefly register your experience: Dear Sir, I had ETS for Facial Blushing / hyperhidrosis . (please delete as appropriate). I regret ever having ETS / I’m glad I had ETS. (please delete as appropriate). I was / I was not given adequate warning of potential side effects. (please delete as appropriate). The side effects from ETS are / are not worse than the initial reason for undergoing surgery (please delete as appropriate). Any other comments: Perhaps include details of how your health has been affected, what side effects do you have, has it affected your career, family life, or any other aspect of your life positively or negatively? Anything about your experience / outcome which you feel changes should be made. I WILL ADD DETAILS OF HOW TO SUBMIT YOUR FEEDBACK TO NICE AS SOON AS THE CONSULTATION STARTS. Thanks, Mark.
  3. Hi all, Are you a UK patient, are you unhappy with ETS result? If so I would like to hear from you. I am currently writing to the UK authorities, including NICE, trying to get a review / evaluation into the effects of ETS. To date no authority has been able to provide me with any evidence of thorough research into the effects / satisfaction of ETS for blushing or hyperhidrosis, nor details of any ongoing evaluation into it's effectiveness or patient satisfaction. I want to get an idea of how many unhappy UK patients there are, also find out if, and who, they have complained to in the past re ETS side effects / dissastisfaction. Please either tag your name on the bottom of this post, or send me a private message. Let's try to improve this situation for others, and ourselves. Best wishes, Mark.
  4. Hello post Ets-ers! A quick post to keep you informed of my Post ETS recovery - perhaps it will give hope to some of you who might feel (as I used to) that all hope had gone once those nerves were cut! It’s just over a year since my last update: http://etsandreversals.yuku.com/topic/3732 Basically I have continued with my Chi Kung practice and things have continued to consistently improve for me. I am definitely not 100% healthy yet. I would say that I am about 70% of full health. Yet ~ 3 years ago I would have put this figure at ~10% or 15%, so it is a terrific improvement. This might sound like slow progress, but the two ETS operations absolutely destroyed my health and left me in a real mess. I was very ill and it’s only reasonable that it will take some time to get back to full health. (6 years of conventional medicine didn’t help even 2%!) I can feel my health and the life I used to have steadily coming back to me. The fact that the progress has been steady and consistent means I don’t feel frustrated in terms of time scales, I know I’m heading in the right direction now. In February I went backpacking to Malaysia for 3 ½ weeks, I think this is a good demonstration of how my health has improved: This was the first time I had been away on holiday for 8 years – since the ETS operations. In the past just travelling to the airport would have been too much for me. But now I was able to cope with all the planning, flights, travelling, trekking, etc, and not only cope / tolerate it, but actually enjoy it and be in no discomfort or pain at all! Another example of how things have improved is temperature regulation. In the past I used to dread the summers here in England (say ~28-30’C), they would be too hot for me and I would have to hide away in the shade with the fan on. I used to sweat profusely from my trunk and groin, and no matter how much I dripped and dripped with sweat I’d still feel hot. As though the heat was trapped and locked up inside me. I also had the feeling of “ants crawling under my skin†that I’ve heard others mention before. However, my ability to deal with temperatures is now much improved. I still sweat a little more from the torso / trunk than most people, but not a huge amount. A little sweat has also started to return to my head / face, only a small occasional amount though (most noticeable above my top lip / moustache area). Temperatures in Malaysia and the other islands I visited reached 38’C, not sure what the humidity was, but it was high! I felt hot at times, but was fine with these temperatures; I think this demonstrates the improvement in heat tolerance. I am now looking forward to the summer here in England, and hope it’s a hot one, something I thought I’d never say again! SUMMARY My health has improved a great deal since I started learning and regularly practicing Chi Kung. I would reiterate much of the advice I wrote in my last post: ..... I would urge you to have an open mind, to look at the following website and see if you can get to a Chi Kung course / find an approved instructor nearby you (available in most countries). http://www.shaolin.org/ Otherwise you could try reading the following book which would give you more information and help you decide if Chi Kung could be for you. You might even be able to borrow a copy from your local library: http://www.amazon.co.uk/Art-Chi-Kung-Making-Energy/dp/0091876575/ref=sr_1_2?ie=UTF8&s=books&qid=1270466204&sr=1-2 Stick to the exercises, (ideally getting an approved instructor to help you), practise the given routine for 3 or 4 months and see what happens. It might sound too good to be true, but perhaps it could give you your life back just as getting mine back. That's all for now, I just wanted to get the message out to anyone who feels they have no options left to try. It’s worth mentioning not all Chi Kung is equal. I would recommend you learn from “Wahnam Shaolin†school per the above link. It’s an advanced school with a strong history and ancestory and proven to get results. I’m not saying all other Chi Kung schools / teachers are rubbish, but I believe the quality and experience of teachers does vary. I have confidence in this school as I’ve experienced the teaching and results myself. (I have no financial interest or otherwise in the above contact, my only interest is that I know how heartbreaking it is living with bad health and I hope others can benefit just as I have so far). Best wishes, Mark.
  5. Hi Pandacubs, I had this problem to, and it didn't go away until just recently, please see my latest post for details. My minor miracle recovery http://www.esfbchannel.com/phpBB2/viewtopic.php?t=3382
  6. Hi LadyRed, I had this problem to, and it didn't go away until just recently, please see my latest post for details. My minor miracle recovery http://www.esfbchannel.com/phpBB2/viewtopic.php?t=3382
  7. Hi post Ets-ers, Just wanted to add a quick post of my fantastic recent experience which may give hope to some of you? I'll keep the details short for now, but basically I had Bilateral ETS in 2002, sympathetic chain above and below T2 & T3 cauterized, no idea of state of ganglia. After the op gradually developed life wrecking neurological problems, light headedness, cognitive impairment, headaches, basically severe altered sensation all over the left side of my head. It felt like half my brain had gone missing. I could no longer do my job, hobbies etc, my life really went downhill fast…tough times. Over the next six years I tried conventional medicine, seeing many doctors, neurologists, physiotherapists etc none of whom were able to help. I then tried many alternative therapies, again none of which really helped me. Then in July 2008 I went on a course Chi Kung course run by Sifu Wong Kiew Kit. This basically involves doing some simple enjoyable exercises once, preferably twice every day, so 15 - 30 mins in total. To start with I felt worse after a couple of months, but I persisted with the exercises and started having weekly lessons with an approved instructor who made sure I was doing the exercises properly and tailored a routine to suit my symptoms / problems. After about 3 months I started feeling consistently better. Better than I had in a long time, better than I can remember for years in fact. I am still not as well as I was prior to having the surgery, but I am still sticking to practising every day, and things are still improving for me. Over the last 6 years I had the odd patch of a few reasonable days here and there, followed by bad ones and generally felt pretty crap and very restricted 95% of the time. Since I have been doing Chi Kung I have CONSISTENTLY felt better, and haven't had a bad day for several months. Those restrictions I had to get used to living with are starting to weaken, and I find myself being able to do more and more. People, this is still new to me, but I would urge you to have an open mind, to look at the following website, see if you can get to a course in your home country or travel if necessary. Stick to the exercises, ideally get an approved instructor to help you, practise the given routine for 3 or 4 months and see what happens…….it might sound too good to be true, but perhaps it could give you your life back just as I feel I am starting to get mine back too. http://www.shaolin.org/ That's all for now, just wanted to get the message out to any one who feels they have no place left to go / try. I have no financial interest or otherwise in the above contact, my only interest is that I know how heartbreaking it is living with bad health and I hope others can benefit just as I have so far. Best wishes, M
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