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Old 10-17-2012, 06:24 AM   #11
Summerhope49
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Originally Posted by amy93stang View Post
I had surgery 12-5-2012 for Tarlov Cyst with Dr. Feigenbaum in Kansas City. I had 5 giant cyst in my sacral area. One was removed and 4 drained and wrapped with a bovine heart. If anyone has question email me.
Dear Amy:

I am a 63 year-old woman and I live in Canada. For a year now, I have been suffering with lower lumbar/sacral pain. Finally, I was able to have an MRI done on September 1st/2012 and it was discovered that I have multiple Tarlov cysts in the lumbar/sacral area. I have been researching neurosurgeons who are experienced with Tarlov cyst disease. Dr. Feigenbaum was the doctor in the US that stood out among all the rest as the best. I see that you have had surgery for your cysts, Amy, with Dr. Feigenbaum. It would really mean a lot to me if you could share your personal experience with Tarlov cyst disease and how the surgery helped you. At this point, I am in horrible pain all the time. I'm still waiting to see a neurosurgeon in our area, but the problem is none of the doctors here are experienced with Tarlov cysts.

With gratitude,
Cathy Harding
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Old 10-25-2012, 12:51 AM   #12
Bridges
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Cathy,
I suggest you connect with the Tarlov Cyst Disease Foundation to receive information on on treatment available to you. A presedent has been established which may be of benefit to you. David
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Old 11-05-2012, 12:37 PM   #13
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I had surgery 2 weeks ago, and I am doing pretty good. I went in with 2 TC and had actually 5.Recovery will take long time. Wishing all who has this problem good luck.
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Old 11-16-2012, 03:05 AM   #14
drosophila216
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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.
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Old 12-11-2012, 01:27 PM   #15
dhedge
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Quote:
Originally Posted by amy93stang View Post
I had surgery 12-5-2012 for Tarlov Cyst with Dr. Feigenbaum in Kansas City. I had 5 giant cyst in my sacral area. One was removed and 4 drained and wrapped with a bovine heart. If anyone has question email me.
I too had five cyst in my sacral area. I had surgery with Feigenbaum in April. It is a long road. I can answer any questions you may have. I would like to discuss how things are going for you.
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Old 12-24-2012, 03:30 AM   #16
amy93stang
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Originally Posted by samsonjake View Post
I too, have just been diagnosed with 5 cysts. I am in the process of hearing that there's basically nothing that I can do except to learn psychological coping methods. I'm currently on celebrex, requip and tramadol. I took Lysine today as well. My husband, bless is heart, has been a crusader in this in the last 72 hours and came across your surgeon. What advice can you give me? I have 3 little ones and i'm only 37. I'm frustrated, mad, feel defeated, while at the same time ...I feel elated that I"M NOT CRAZY!!! These took 5 years to finally diagnose. It's been decided that I've had these for around 20 years. I would love to hear about your surgery and any advice you can give me! thanks so much! Shelly
I sorry on my message I wrote my surgery was 12-5-12 the date was 12-5-11 I hit wrong number . I did have 5 giant csyts 1 taken out the rest were drained and wrapped. I was in hospital for 4 days. I had severe spinal headaces for 3 days. I was good for few month after surgery, then found out on my 3 month MRI I had more cyts. I had another spine surgery with De. Feigenbaum 8-22-12 this time at his Dallas hospital where staff were great. I first surgery was in Kansas City horrible nursing care. Again I felt good couple months. Now I'm in horrible pain had MRI sacrum November I have 3 cyts now. I have to pay the fist $10,000 for every surgey because he is not in my network. How much pain are you in???
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Old 01-02-2013, 10:12 AM   #17
Santiago Garcia
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Quote:
Originally Posted by amy93stang View Post
I had surgery 12-5-2012 for Tarlov Cyst with Dr. Feigenbaum in Kansas City. I had 5 giant cyst in my sacral area. One was removed and 4 drained and wrapped with a bovine heart. If anyone has question email me.
Hi,
I wanna know how are you right know about your cyst?
Did you feel any better?
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Old 01-06-2013, 11:42 AM   #18
bobiJ
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3 months after surgery. Pain is there, sometimes more then before surgery. I hope it will go away.
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Old 02-10-2013, 12:06 AM   #19
ruby2zdy
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Originally Posted by Silver View Post
I also have Tarlov cysts, but others named and not named inside my spinial cord. Two days agao they found cycts in my kidneys also, not named just kidney cycts. Any idea why people get these or have multiples of different cycts and in different places? After reading they can come back and cause more to develope I decided not to do surgery, plus I have alot of other issues - tumors - any advise
Could you have neurofibromatosis? Have you seen a neurologist? Good luck.
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Old 04-24-2013, 11:15 PM   #20
ademasters
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I have them from C3-T2 and now waiting for insurance to ok another MRI for sacral area.
But is there a difference between them when you change location of the spine? Also, my pain management doctor, an anesthesiologist DO ?, wants to aspirate them ...is this who should be doing it or should I be getting a referral to someone else?
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