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Has anyone seen this NS for a Tarlov Cyst? He is at UCLA Santa Monica and I am trying to reach his surgery patients, if any on this site.
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Larry Khoo, MD
- By tobim
- Posted February 23, 2008 at 10:16 pm · 11 replies
- In Finding a doctor
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- By NORD-RN
- Posted February 25, 2008 at 12:33 pm
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You may be able to obtain some helpful information from a wonderful patient resource organization called The Tarlov Cyst Disease Foundation--
http://www.tarlovcystfoundation.org.
Best of luck to you.
Stefanie Putkowski, RN
NORD
- By distressed
- Posted February 26, 2008 at 2:07 pm
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Dear Sir:
I'm not sure what you are asking and are you an MD? I am presently suffering from gigantic tarlov cysts and would be happy to talk to you about what I have found and get more information as to what your questions are and why you are asking about this. Tarlov cyst disease is a rare condition that not many drs. recognize, Neurosurgeons especially, they are considered "incidental findings" on MRI's and those of us with them suffer suicidal levels of pain while drs ignore our suffering. If you would like to seriously talk and have specific questions please email me at distressed100@yahoo.com . I'm familiar with all the sites about tarlov cysts and would gladly give you that information.
Sincerely,
D. Goetz
- By distressed
- Posted February 26, 2008 at 2:15 pm
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Dear Miss,
I posted a few minutes ago and then saw you were female, so sorry. I also see you are a tarlov cyst sufferer from your information on the site. I would really be very happy to talk to you and share and listen to what you have found out. Also you ask about dr.'s in UCLA that treat tarlov cyst and on the TT site, there is several memberes who have been patients with different drs there. Included here is the sites for you to check out yourself if you want to go to the sites and join and talk to people yourself. Tarlov Talk (TT) is a very informative site with people that suffer with tarlov cysts and may have the answers you are looking for. Also, as I said before I also would be happy to talk to you and answer your questions. The reason I come to this site is to look for people who are searching for help for tarlov cysts and having been in there shoes also I want to help others find the answers and help they are looking for.
Thank you,
D. Goetz.
INTERNET ADDRESSES
http://www.health.groups.yahoo.com/group/TarlovTalk/join (This is the Tarlov Talk site to join it)
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://www.tarlovcyst.net
- By Suest
- Posted February 27, 2008 at 3:48 pm
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If you go to tarlovcyst.net and join the tarlov cyst forum at yahoo, there is a file section and in the file section there is a list of doctors in the United States and another list for doctors world wide.
In fact, there are a few files there that are worth looking at.
Sue
- By dean45
- Posted August 17, 2009 at 9:57 pm
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im a 45 years old male suffering with a large tarlov cyst of 3.5 cm eroding away sacrum , i live in bakersfield, ca. desperantly looking for a doctor in ucla that would perform surgery on me . ive been suffering with this pain for over 4 years now, my family doctor has worked patiently with me , but all the surgeons have said that tc are not the source of pain. my cyst is the communicating type with a whole lot of pain . tobim if you like you can write me at alberson1@yahoo.com, i will appreciate any info. desperate in bakersfield, dean
- By tobim
- Posted August 17, 2009 at 11:53 pm
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Hi Dean,
sent you a personal email to your yahoo account with more info, but yes...I did find Khoo and had surgery with him for a giant 5cm TC wreaking havoc on my now super thinned out sacrum and all those nerves in the lower body.
I'm doing extremely well a year and 1/2 later....just a miracle! Dr. Khoo just opened a spinal clinic at Good Samaritan Hospital in Los Angeles. I'm writing from an airport, but I'll send details when I get home. I also sent you my cell phone number so feel free to call!
Best, Tobi
- By tobim
- Posted August 17, 2009 at 11:53 pm
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Hi Dean,
sent you a personal email to your yahoo account with more info, but yes...I did find Khoo and had surgery with him for a giant 5cm TC wreaking havoc on my now super thinned out sacrum and all those nerves in the lower body.
I'm doing extremely well a year and 1/2 later....just a miracle! Dr. Khoo just opened a spinal clinic at Good Samaritan Hospital in Los Angeles. I'm writing from an airport, but I'll send details when I get home. I also sent you my cell phone number so feel free to call!
Best, Tobi
- By Maggie2300
- Posted August 18, 2009 at 5:57 am
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Hi all
Does anyone know of a Doctor in Australia who does surgery on TC's
Maggie
- By dean45
- Posted August 18, 2009 at 10:24 am
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sorry , i just wrote u again on tuesday , didnt find ur write back on inspire til after, im grateful for all your help. its good to find folks who are or were suffering as iam , thank you, dean
- By dunkeswell
- Posted October 3, 2009 at 6:20 pm
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Hi Maggie,
Go to the Tarlovs Foundation for a list of competent doctors throughout the world who have experience in this. The foundation vets all surgeons who want to be listed and their criteria is stiff, so they know their stuff. You can also get in touch with the founder herself and she can walk you through much of this. Get in touch with me if you want some more information.
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