Tarlov Cyst Surgery
 

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.

help
 

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

Tarlov cyst
 

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.

hey there
 

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

doc in this area?
 

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.

Cysts, different kinds?
 

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

Tarlov Cyst surgery
 

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

tarlov cyst
 

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.

I have them
 

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

surgery
 

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

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

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

surgery
 

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. :)

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.

Hello
 

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.

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???

Hi
 

Hi,
I wanna know how are you right know about your cyst?
Did you feel any better?

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

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?

Tarlov cyst surgery
 

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.

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

How are you doing with your surgery?

How come people who say they've had the surgery never come back on with their experiences and final outcomes? I've seen this on other sites too. Come on, people, give the rest of us some hope (or at least the truth).

Glad to reply, Starfish! Today I left home at 6:00 AM, drove nearly 60 miles to have my truck repaired, went to breakfast at a fine diner, did some shopping, drove home, fixed lunch, then went to work on my construction job. I own and operate a large hay and grain farm, in addition to my construction business. I have spent several weeks this year rafting rivers here in the northwest, in addition to travelling throughout the northeast of the US. While I never again will be able to construct cable suspension bridges and timber framed bridges throughout the northwest, I have a good life, considering what I had been diagnosed with. The surgery performed by Dr. Feigenbaum and his assistant Debbie West restored my life. The only obstacle I encountered on this journey was erected by the Sate of Oregon workers compensation system, aka: SAIF. They did everything they could to prevent me from obtaining the necessary medical care.
Please know that there is hope for those diagnosed with symptomatic Tarlov cysts. PM me if you need more information.
David

Hi, I was not on Talk for while. I did have a surgery October 2012. I am back to work since January 2013, working full time job. Will have MRI in October and visit with Dr. F., 1 year after surgery. I'm doing really good, just about everything like before surgery. There is some pain, when I sit too long, I will get up and walk, that helps. Also standing too long, is like I have to get moving. I am lucky, because I have a job where I can sit and walk, so there is no problem. I have to be careful lifting, and also twisting. Going down stairs still gives me problems. But I can sleep on my back (it was problem before surgery). Truth. Yes, there are times, when my back hurts and I will use ice pack. But not as often. I hope this helps you.

I just met with Dr F. and am going to schedule surgery. How are you doing?
I am very nervous about having the surgery.

tarlov cysts surgery
 

I would like to email you to talk about how you are doing but I am new to the site and cant find your email. . I just had a consult with Dr. F and I have one large and 2 smaller cysts. The surgery scares me but my discomfort is very difficult. I would love to communicate with you about your experience.

Hi there. I had surgery with dr f in June. If anyone has questions, feel free to asks

Gypsy

David, how are you doing now?
 

David, how are you doing now? I'm 62 with an 8 mm cyst to right of s2. I was injured falling from a cutting horse in 2009. I've heard so many horror stories about people being in worse pain and reoccurring cysts following surgery, I've been afraid to go through with the surgery. However the cyst is getting worse now and I'm starting to have numbness in legs and feet. Any feedback would be much appreciated.

I am doing GREAT! For the record, I was declared "permanently totally disabled" as a result of my accident. It took a while to get myself back in shape following surgery with Dr. Feigenbaum, but keep in mind I was out of work for nearly five years. Last week I framed a new roof for a shop I am building. Feel free to PM me, and we can talk on the phone if you like. Or, you can make contact with me through Dr. Feigenbaum's office. Don't waste any more time suffering needlessly!
"Bridges"

Now?
 

How are you now? I have surgery on Nov. 6th and a little nervous.

i am scheduled for surgery dec 18 with dr f. How are you doing?

How are you doing now
 

How are you doing now? I hope the surgery was successful!
Kathryn1

Have you had surgery? How are you doing in your recovery if you have had the surgery?

How are you doing Rob? I am scheduled for surgery on Dec 18 th 2013. Am nervous about recovery and outcome. Would love to hear from you.

I have not had surgery as of yet. I am researching if patients longer than 2 years after surgery how they are feeling today.
Kathryn1

Had Surgery
 

So glad to hear you are doing well. I had surgery on Nov. 6 2013. I had 2 cysts drained and wrapped and 2 cysts just wrapped. I am doing well so far. Can I ask what you did in the first 2 months to rehab yourself? I want to do this right and try to minimize scar tissue build up.

A few things you can do: Be kind to your body. Be aware of what you put into it...treat it like a baby, and nourish it as though you are bringing it back to life. Stay healthy: Remain active, but do NOT do ANYTHING that can cause an impact to the spine, or requires you to exert those muscles which affect your spine, as in heavy lifting. Walking, water aerobics, and gentle yoga were activities I engaged in after surgery. Avoid standing or sitting for prolonged periods. Lying flat on your back, sometimes with your knees pulled up to your chest with your hands around your ankles or knees, will help you remain flexible. When using stairs, do it slowly, one step at a time. If you smoke, stop. If you consume alcoholic beverages, use moderation. A glass of red wine helped calm me, as I wanted to get going again, since I had been "cured"! Don't expect that all will return to "normal" within a few weeks. Your body has undergone a major invasive procedure, and will require some to heal and adjust. PM me if you have further questions. And, welcome to the Club!
David

Thank You
 

Thank you for taking the time to respond. I don't know how to PM you?? I am walking 3 to 4 times a day for about 20 minutes each time. I rest the remaining time. I want to get back to being active but I will not push it.

It''s so nice to hear from someone who has had years of success. I medically retired prior to my surgery...I hope down the road I can get back to work. I have been a detective for 15 years but I couldn't pass the physical any more. How do you feel after physical activity? Do you still get flare-ups? If so, what are your symptoms?

Thank you for your help.
Kim