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Old 12-06-2013, 02:55 PM #11
ccmcguire ccmcguire is offline
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Default Remove your cyst?
Quote:
Originally Posted by carmenrae View Post
Great to hear!! I am waiting for word from Dr Welch at University of Penn about my surgery. They are going to completely remove mine after years of issues including loss of eyesight, incontinence, pain...tired of walking with a walker at 43 years old. It's ridiculous!!! Glad to know things are better after surgery!!!! Gives me hope!
Wow! I haven't heard of actually removing a cyst. Dr. F wraps them. Can you provide any links regarding removal? I haven't heard of this doc before. Did you see Dr. F about your cyst? Mine is 8mm to right of S2. Where is yours?
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Old 12-06-2013, 03:00 PM #12
ccmcguire ccmcguire is offline
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Default Have you been getting the information you need?
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Originally Posted by drosophila216 View Post
hello sir/madam

i'm ethan from malaysia. i have a 33 year old girlfriend who just recently diagnosed with Tarlov Cysts. she has 2 of them at the S1 and S4 part of her back bone with the size of 0.8 and 1.3 respectively.

she also suffer from autoimmune disease and pain on some part of her joints and body. she always tired and not in the mood sometimes and abit of libido. yes i expected the doctor didnt have any solution for this medical issue.

please help me to help her recover. i really in need of your advice so much.
i love her very much and its killing me to see her like that. she a lovely young lady. she is a brilliant baker & sugar artist.

please help me, i really need your advice.

please email me and thank you for lending me your ears.
Have you been getting the information you need from this website? If not try checking out the Tarlov Cyst Foundation website and Dr. Frank Feigenbaum, Tarlov Cyst Institure in Dallas, Texas, US.
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Old 12-06-2013, 05:55 PM #13
ginnie ginnie is offline
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Default Hello Etyhan from Malaysia
Long way away, and welcome!!!! I am sorry your girlfriend has these cysts. I do know what they are. I think the decision to do surgery or is based on the severity. Auto immune problems also are a consideration. May I ask what kind of auto immune issue she has? I have several going on, and my doctors are indeed careful, especially for surgery. I hope she can find a solution that works. I don't know too much about the medical facilities in Malaysia, but I would guess that the best place to go would be a teaching hospital. Second opinions are always a good idea. You found a great web site, and you will find those on here who also have this condition. Again Welcome, ginnie
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Old 12-09-2013, 10:20 AM #14
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Quote:
Originally Posted by ccmcguire View Post
Hi Philippe, I am trying to schedule surgery for 8mm cyst to right of S2. Dr. F also does surgery on Cypress for international patients. Not sure if he does cyst surgery there.

Bridges (David Williams) who lives in Oregon had surgery with Dr. F three years ago and is doing very well. He is also going to be on the Tarlov Cyst Foundation board in 2014. You can e mail him through this site or contact him through the Foundation. I think he monitors this site but there are so many threads, it might be better to try looking up his posts. Hang in there!
Hello. Thank you very much for your post. I Know that Dr F does surgery in Cyprus for International Patients. I sent my MRI and it seems that I'm candidate for a surgery. This is the reason why I want to have testimony about this type of surgery. I have to find Bridges (David Williams), his email. I'm looking for his posts. If someone know his email and can give it to me, it would be so kind.
Sorry for my American. I hope that you understand me.
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Old 01-21-2014, 08:20 AM #15
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Default TC surgery
I had tc surgery with welch 2011 & did great.
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Old 01-22-2014, 09:32 PM #16
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Quote:
Originally Posted by Philippe View Post
Hello. Thank you very much for your post. I Know that Dr F does surgery in Cyprus for International Patients. I sent my MRI and it seems that I'm candidate for a surgery. This is the reason why I want to have testimony about this type of surgery. I have to find Bridges (David Williams), his email. I'm looking for his posts. If someone know his email and can give it to me, it would be so kind.
Sorry for my American. I hope that you understand me.
I had surgery with Dr. F on November 6, 2013. I am glad I had surgery. I had 4 cysts. He does NOT remove the cysts since they are attached by nerve endings. He cuts the cyst open, drains the fluid, plugs the hole with a small piece of fat from your body and the wraps the cyst in skin from a cow. This way it won't refill and alleviates the pressure on the nerves.

My recovery is going well, but still have some pain. That's normal since I'm not quite 3 months post-op.

Hope this helps.
Kim
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Old 01-23-2014, 12:06 PM #17
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Default Curios
Why would a person receiving the skin from the cow, not have their immune system try to reject it. Is this skin, prepared in such a way that it doesn't harm a person as in a bone graph? Just curios ....ginnie
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Old 01-23-2014, 03:38 PM #18
hevnw8s hevnw8s is offline
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Grin
Quote:
Originally Posted by ginnie View Post
Why would a person receiving the skin from the cow, not have their immune system try to reject it. Is this skin, prepared in such a way that it doesn't harm a person as in a bone graph? Just curios ....ginnie
Lol. Yes. It's very safe. He has done over 800 surgeries using this method. There are many others with immune deficiencies and compromised immune systems who have this surgery. It's a very small amount and it's very thin which makes it easy to wrap.

Dr. Feigenbaums office welcomes calls and they will explain any questions you may have.

Kim
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"Thanks for this!" says:
ginnie (01-23-2014)
Old 01-28-2014, 10:13 PM #19
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Default
The "skin" is tissue from the heart muscle, bovine pericardium. This is not unusual. The only drawback is that the person receiving the tissue is no longer acceptable as a bone marrow donor. However, considering the benefits, this trade-off is well worth it. While I can no linger donate marrow, I do grow my hair for Locks of Love, in honor of the woman who first inspired me to become a marrow donor.
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"Thanks for this!" says:
ginnie (01-29-2014)
Old 01-29-2014, 09:30 AM #20
ginnie ginnie is offline
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Default Hi Bridges
Thank you for donating your hair. I have alopecia universalis, and I can tell you the children who are hit with this disease, as well as cancer are helped so much by what you do. Thank you again. ginnie
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