Tarlov Cyst Surgery

[amy93stang]

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.

[samsonjake]

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

[Angela King]

I have been diagnosed with a large Tarlov cyst in my sacral area which is causing severe pain and discomfort in my lower legs - particularly bad in my right leg, with numbness from the knee to the toes. I would like to have surgery. Amy, was this surgery expensive? I live in UK.

[gwen0725]

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.

Thank you for posting. I live in NC, May I ask where you live? And the process for Dr. Feigenbaum?

[yoganana]

Thank you for posting. I live in NC, May I ask where you live? And the process for Dr. Feigenbaum?

I am in NC too - do you know Docs in our state; I am at beginning of Tarlov journey, so not even thinking surgery, just want someone knowledgable to manage pain while I pursue alternative therapies.

[Silver]

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

[vibewise]

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 Amy,

My sister has been diagnosed with a tarlov cyst, which is causing her debilitating pain and I'm wondering how your surgery went and if all is well with you post operation. I had read that draining/aspirating these cysts is often ineffective in that they fill up again shortly thereafter, so I'm wondering if yours have stayed drained.

Thanks for posting and inviting others to reach out to you.

Regards,
Lisa

[bobiJ]

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 have 2 Tarlov cysts, and waiting to be scheduled for surgery with Dr. Feigenbaum in Dallas. Long wait, about one month and did not get scheduled yet. Did surgery helped you? and how long was recovery time.

[Rob64]

Just got news I have these cyst i am so angery not sure what to do i want to go back to being myself active could some one tell me how does the surgery work I have read mixed things bad or goodi did it work
Thank you
Rob

[bobiJ]

Just got news I have these cyst i am so angery not sure what to do i want to go back to being myself active could some one tell me how does the surgery work I have read mixed things bad or goodi did it work
Thank you
Rob

Rob, will have surgery next week with Dr. F. in Dallas. I hope it will go well and I will be without pain. bobiJ:)

[Summerhope49]

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

[Bridges]

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

[bobiJ]

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. :)

[drosophila216]

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.

[dhedge]

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.

[amy93stang]

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???

[Santiago Garcia]

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?

[bobiJ]

3 months after surgery. Pain is there, sometimes more then before surgery. I hope it will go away.

[ruby2zdy]

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.

[ademasters]

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?

[sandra74]

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.

How are you doing post op? I am new to this site and a new patient of Dr. F.
Considering surgery but very nervous about the recovery.

[Bridges]

Sandra,
If you are "considering surgery", perhaps you do not need it? I can speak only for myself, but once I made the connection with Dr. Feigenbaum, my primary concern was "when can we proceed with the procedure?". When it is determined that surgery is the most appropriate course of action, then it is your responsibility to prepare yourself for the procedure. By that I mean you must watch your diet, arrange for post-op assistance for your in-home care, and address a range of issues that your surgeon will discuss with you once you have been selected. This procedure is not comparable to going to the dentist.....it can literally restore your life, but you play a major role in the outcome.
David