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TOPIC: DocSarah

Re: DocSarah 6 years, 6 months ago #1050

  • Kim
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Hi Claudine
The only reliable source on the internet for me is www.theAword.org if a search doesn't give you want you want. I will find it for you.
I had an email this week via the forum and then I get a post from this Facebook about the same thing. So I replied to Louise privately with the link. (Not DocSarah) I gave her the link on our website to the only article written other than by DocSarah that I allowed to be published. It is in Serendipity (articles I couldn't seem to place anywhere else)
www.theaword.org/index.php?option=com_co...dipity&Itemid=48
I had met Prof Daymond before and at the same time as DocSarah on a number of occasions. (not as a patient).
When they left the Arachnoiditis Trust, (very quickly followed by me) I had kept all articles I had published and asked DocSarah to include this one article on the website. She approved, although she has not had the treatment herself but as a medical professional had a great deal of respect for him. He is a rheumatologist.
I was at that time on a telephone helpline so received many responses. I had one severe adverse reaction but from a patient whose doctor had not followed the protocol. The other responses were good to maybe. I am not medically qualified, I just listened to people.
It is one of the follow up articles I want DocSarah to do for me. I have Prof Daymonds secretary email but I would prefer it if I could get them to discuss an updated response on the small scale research he did.
I cannot, in all honesty, put that pressure on her at the moment, but rest assured I will as soon as I know she well enough:kiss:
Take Care
Kim
NEMESIS - goddess of indignation against and retribution for, evil deeds. Apparently regarded as an avenging or punishing divinity - I wish.
The following user(s) said Thank You: tarlov

Re: DocSarah 6 years, 6 months ago #1051

  • tarlov
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Hello Kim...I always tell people to refer to the Aword as to reliable information about AA....But there are also patients that have both AA and Tarlovcysts. As for Tarlovcysts, I have been working for 10 years now, with professionals , I have access to medical information that can be trusted. I read on so many forums things that are told to other members as facts and are not medically correct, people sent to dangerous surgeries by people that have no medical background and no experience, and many , after, suffering from scar tissue and AA...So I am doing that to give reliable information in English about Tcs, to send people that have both to theaword.org,
And I have been obliged to make a similar cause in French. All day long I receive phone calls from French and Belgian people that are searching for information on both pathologies and nobody but me answering. As I am handicaped to 85%, have no pain management because of allergy to narcotic...it makes me very tired, and I am alone to do that. To post information where people can read it somewhere is helping me and others.

As to Procaine, It would be wonderful to have an update...but first of all, Doctor Sarah must have rest, lots of rest, to recover the more she can...Heartfelt kiss.
Take care
Claudine
"A healthy body is a guest chamber for the soul: a sick body is a prison."Francis Bacon

Re: DocSarah 6 years, 6 months ago #1052

  • Kim
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Hi Claudine
Sorry for the delay in replying (Family weekend trauma)
I have to admit that until I heard from you I have never heard of Tarlov cysts. In fact all I had ever heard of was "cysts"! Not even arachnoid cysts in the early days. That was in the early 1990's. I did increase my knowledge and campaigned until the early 2000's. Nearly 8 years on the helpline, both national and international, people never categorized other than a cyst or cysts. I am still haunted by one young man (local) who had been told he had a massive cyst, covering half his brain and had a clinic appointment where he was told "we could operate or not, it's your choice" No information, nothing! I campaigned on his behalf to the hospital, a newly formed charity British Brain and Spine, without success. In fact it took them 10 years to provide a very bland booklet on Arach Cysts. Of no help to anyone!
I admire your commitment, Claudine, but I cannot give advice as I am not medically qualified. Which is why I left the Arachnoiditis Trust and made my mission to promote DocSarah and her information.
It was and still is a heavy burden that I have given her. Another reason why I am so protective of her.
I have another avenue for an update on lidocaine/procaine to follow, but it will always be with the agreement of DocSarah!
Take care
Kim
NEMESIS - goddess of indignation against and retribution for, evil deeds. Apparently regarded as an avenging or punishing divinity - I wish.
The following user(s) said Thank You: tarlov

Re: DocSarah 6 years, 6 months ago #1053

  • tarlov
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I understand Kim..

As to me, having a scientific background, having specialist in my family, and pharmacists, has been helping me to learn. I did what a doctor does: I studied, at least for that part of the problem, like a real doctor wold have. In september, I'll have a graduation for educating people in the field of Tarlov and meningeal cysts...

It is very dangerous to operate on them and most of people do not get better but worse, like myself. Kim, I am in severe pain 24/7 and if I could not educate others (always going on to learn in the meantime) I would no more be there.


Take care Kim,
Sincerely
Claudine
"A healthy body is a guest chamber for the soul: a sick body is a prison."Francis Bacon
Last Edit: 6 years, 6 months ago by Kim. Reason: unnecessary
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