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Need someone to talk to who has TARLOV CYST Disease
PLEASE EMAIL ME AT morgan.652@osu.edu
Need someone to talk to who has TARLOV CYST Disease
PLEASE EMAIL ME AT morgan.652@osu.edu
Hi Jane,
Here are the sites you want to check out or anyone else who thinks or knows they or a loved one has tarlov cysts.
INTERNET ADDRESSES
http://www.health.groups.yahoo.com/group/TarlovTalk/join?
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://spineuniverse.com
http://www.tarlovcyst.net
Dear Jane,
I wrote a comment here a couple of weeks ago and tried to email you at the address you gave but I can't get any emails to go through to you. My email address is distressed100@yahoo.com
Feel free to email me personally and maybe we can talk. I don't know if you have another address but I can't get through on the Morgan one. Sorry would love to help.
Debbie
Hello,
Has anyone on this site heard of a Dr. Larry Khoo from UCLA in Santa Monica, California? I am seeing him and considering surgery in March with him for a TC. Would love to hear from someone who has heard of him. He's performed 11 TC surgeries here in L.A. Thanks, Tobi
Don't know Dr Khoo, but while on the subject I live in Australia and have an appointment with
Dr Mark Sheridan in Liverpool and wondered if anybody has been to see him or heard of him:
Thanks
Margaret
If you join tarlovcyst.net and then join the tarlov talk at yahoo, you will find a files section. In this section there is a list of all the known doctors both in the USA and world wide that treat Tarlov Cysts. In fact there are a few files there that might be of interest to anyone with Tarlov Cysts, even files for physicians on how to aspirate them.
Hope this helps some one.
Sue
Hi, I hace not heard of Dr. Khoo, either - but my question to you is why you have decided to do the operation. Have your Tarlov cysts hindered your quality of life or is there fear of them bursting and doing internal damage? I have 2 Tarlov cysts on my sacrum and the doctors i have seen do not show a sign of concern -
Thanks, Teresa
P.S. godd luck with your surgery.
I see others on this site asking about some of the doctors who treat Tarlov Cysts and asking if anyone has heard of them.
It is so very hard to know which doctor(s) are the top, proven, doctors for surgery. Does anyone know how the lay person can get the "inside" scoop on the various doctors?
Their reputation as a surgeon among other surgeons.
Their skills as a surgeon, as viewed by other surgeons/doctors and the hospitals.
Their reputation from the nurses what work with them.
Is there any way a person can learn this type of info before selecting a surgeon?
Thanks
I've opted to have surgery due to severe pain, bladder and bowel frequency and loss of physical functioning. I was very athletic and active, and I am also a special education teacher of pre-school age children and single mom of two teenagers. Now I can barely make it through the work day (due to pain and difficulty bending and sitting) and have 0 exercise tolerance. My children and I were very active together (biking, hiking, tennis) and now I just lay around from pain. I just can't keep living like this without taking some measure to a more fulfilling life.
All the best to you. Tobi
Hi, Tobi
My heart goes out to you. I'm so sorry to hear you have had such set backs. I too have been a very active person and i can see how i am beginning to slow down - it is just enought for me to do my usual walk routine -
I began my doctor visits with my GYN since the pain in the groin can simulate other issues - that is all clear - i then went to 2 orthopaedics who insist it is my hip - they are the ones who had the MRIs done and yet none of them spoke of the Tarlov cysts that were mentioned and so i went to see Dr. Razi from the Madison Avenue Orthopaedics who is a spinal doctor known for his work with tarlov Cysts in NYC. He also did not see a concern and sent me to his "hip" surgeon, Dr. Adler for consultation and of course he insists it is my hip as well - i just don't want to get a hip replacement and it reveals the problem still exists becuase it turns out to be these cysts. I do not have all the symptoms you mention in your note (not yet anyway) and if these cysts did not show up on the MRIs i would not even be questioning the orthopaedic surgeons on their diagnosis - but they are there and i do question it -
Keep smiling even when you don't feel like it!
Teresa
Hi Margaret,
I have just been diagnosed with a TC and I am from Queensland. How did you go with Dr Mark Sheridan??
I hope all is okay...
Cheers
Louise
Hi Louise
I only saw Prof Sheridan twice, and he sent me for an MRI as the last one I had was in 2000 before I had surgery. He doesn't think there is anything else that he can do for me, except maybe put in a Spinal cord stimulator. But it would only help with the leg pain and not the sitting and other pain. Otherwise I found him to be very caring and helpful. Are you thinking of going to see him?
Margaret
Hi Margaret,
Yes, I was thinking of seeing him. I have a TC on my left sciatic nerve about 4.5 cm which came up in my MRI last month after 8 months of docs thinking it was endometriosis and 2 lapro surgeries later. I found his name of the TC website and from what I see not many neuro's deal with this problem.
Where was your TC located?
I hope you are doing ok with the pain.
Louise
I had several cysts at L4.5 S1 S2. They were aspirated by Prof Sears in 2000. I only had relief for about 2 days which was heaven, but didn't last as the physio that insisted I do hamstring stretches started the pain again and it has never stopped.
I have just about given up and only decided on a new opinion after I had a proplapse fixed last year and it caused more nerve damage to the bladder and now I have to self cath, as well as being in continual pain. I also went back to Prof Sears but he said that I now have one large cyst that fills the whole sacrum area and there was nothing else he could do.
Good luck
Margaret
Hi.
It's been so long since I've posted on this site. I forgot that I ever even signed up, as I've been on two other TC sites over the last year....and have had quite a journey!
I ended up having the surgery with Larry Khoo, MD at UCLA Santa Monica...Thank God!! I am 9 months post-op and have my life back!!! I'm back in martial arts, riding bikes, hiking and generally active. I can run around with my two teens, and am so much more of a preschool teacher with no pain at work!!
I've lived through such a crazy and miraculous journey and want everyone with TC's out there to know to KEEP HOPE ALIVE!!
My prayers......Tobi
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