Kim,
"Click" on my screen name (Bridges) and follow the prompts. LE background? Commonality...

I still couldn't get directly to you. I am doing well so far...still walking 3 times a day for about 20 minutes each time. I do light house work and then lay down to rest my back and the incision.

So are you LE as well? It's only been a few weeks since I left but I miss it. I thought I would do this job for 30 years. This is a nasty little disease.

Insurance for Tarlov cyst surgery
 

I want to warn people to make sure they have adequate insurance coverage. You have to call the insurance company, get the name of the agent and the reference number for the call. Document the date and time and subject of the call. Do this to find out if the hospital, anesthesiologist, doctor and procedure are covered. Do each separately. the procedures is called "treatment of sacral meningeal or tarlov cyst" if it is a "sacral" cyst. The procedure code for this one is 64999. In addition, Dr. Feigenbaum or who ever the provider is needs to make certain they get a "letter of authorization" that the insurance will pay for it. Be sure you do this separtately for "in network" questions and all other questions separately. Be sure to document. I was recently stuck with a bill from a hospital where both the insurance company and the provider informed me incorrectly and I could not prove I called. Don't let this happen to you!:mad:

Also Laura at Dr. Feigenbaum's office says they have difficulty getting insurance companies to pay and they may want you to do some of this leg work for them in advance or they will ask you to pay "up front" and you will just have to hope you get reimbursed. This could delay surgery but it could save you thousands of dollars.

Hi David,

I have met with Dr. Feigenbaum and am considering surgery for bilateral s2 4mm tarlov cysts. If you are open to it, I would like to talk with you about your surgery and recovery. I am new to this forum and I don't see a way to PM you. Sorry if I am missing this.

Kevin

Kevin,
Click on my screen name and it will take you to my profile page. There you will see the options available.
David

Hello! Wondering what are the criteria for being a candidate for this surgery? I'm pretty miserable and depressed with the parethesias, but don't have what I would call "pain". Thank you!

Tarlov Surgery
 

I'm sorry for anyone has left me message.

I have had 2 surgeries with Dr. Feigenbaum for my Tarlov Cysts.


I'm not on computer a lot because of my

condition. If will help with information that I can.

I can sit longer and my sacral pain is less. I have sharp shooting leg

pains that I didn't have before. My over all my pain level from last year

is down.

Ylrhylrh
 

Hi, I am new too. I am miserable and depressed too. I was wondering if you would share your symptoms so we can compare? I don't really have pain either except in my groin. I just have weird neurological creepy stuff in my legs. I just had an MRI and a tarlov cyst was found at S1. I have had pelvic/groin pain for the last year. I had multiple studies...Abdominal CT, colonoscopy, sonograms, etc. .... Nothing showed up. The pain got so bad that I went to the ER in April and was told I had diverticulitis. That happened 3 times over last summer. They told me that I needed a colon resection. I had a colon resection in August and guess what...still had the groin/abdominal pain. I just had the MRI that showed the cyst. I think I had my sigmoid colon removed unnecessarily... Then I started having the parenthesis in my legs. That is why I had the MRI. Have you had groin/abdominal pain?

Yes, I had lower abdominal pain and groin pain too. Don't have after surgery. I had 2 large cysts, had surgery on 5. I am about 17 months after surgery.

Thank you so much for replying. I am new here and don't know how to maneuver around the site. Would you mind talking to me about your experience? If not, could you tell me how to email or call you? Thank you!!

I can't find your email address here anywhere..
 

I am looking to go see same doctor -Please tell me how your surgery experience went.

Jean here. Diagnosed 3 yrs ago. Low pain (sciatica - ugh). Taking Gabapentin
Only. I use Flexeril sometimes. Leg numbness n heavy legs comes n goes. Of late, I have burning and wobbly sort of. A big worry. Now having nu bladder n bowel symptoms. Sooooo time to act. Want my life back. My daughter is living in Alexandria. Was thinking of seeing Dr Henderson. eval me. Having nu MRI on 15th. I am in a yahoo group for 3 yrs. Met many who are thriving post op.
Email me. Let's talk. jean

I have many neuro 'creepy' leg effects. I swear it effects my vision at times
Too.

Jean in Florida

Provider denial
 

How do you get physicians/providers to admit that the pain could be from the tarlov cyst? I think that has been the most frustrating for me.

When your MRI shows Tarlov cysts, and any kind of treatment does not work. I had my MRI done first time in 2010, back pain, lower abdominal and groin pain, left leg (not below my knee), could not lay on my back without pain so bad, like something is tearing inside. I went two different Dr. I had epidural inj., steroid inj. so many different inj., physical therapy(that made it worse), finally second Dr. suggested to see Dr. F. in Dallas. That was 2 years later. I had surgery 18 months ago with 5 cysts in my sacrum, and doing very well. Wishing you best.

Hi Jean, I would love to talk to you. can you tell me how to e-mail you? Thanks

Do you know the location and the size of the symptomatic ones? So good you don't have the pain any more :). Did you have other symptoms besides the groin and abdominal pain? My cyst is on S2 and is 1.3 cm. thanks

From my first MRI, on S3, about 11mm, this was 2011. I had surgery on 5 cysts, S3 L+R, S4 L+R, and S2 R. I was treated for bulging disk for all that time before . I had pain in my lower back, that was reason to see Dr. When they said is disk causing the pain, I got all these treatments they could give me.no help. I had surgery for TC pretty quick after I found out it got bigger.

Thanks for responding :). Just curious. What area of your thigh hurt? Front, inner, back, or outer? Also, was 11 mm the size your cyst was when you had the surgery? I read that the best outcomes are with cysts over 15 mm. Are you totally pain free now? I hope so :)

Can symptoms come and go?
 

Do any of you know if the symptoms from the cysts come and go for days, weeks, months, or years? Or has you experience been that once you get the symptoms they don't go away? Thanks

New to the forum
 

Hi everyone...new to the group.

44 year old male, with 3 cysts at 1.4 cm, and one at 1.6 cm. My surgery is this coming Tuesday with Dr. Fiegenbaum. I've been dealing with low back and buttock sciatic pain for years. As a recovering pain med addict, with several major health conditions not related to the cysts, I am limited in what I can use for my pain. Currently on Fentanyl 50mcg patch with a Pain & Addiction Specialist. I am so hopeful that this surgery will give me some relief.

I'd also be interested in finding information on what to expect post surgery. If this doesn't work, my next step is a neural stimulator.

Hello midnightatom,

I'm sorry I can't help you with your questions but I just wanted to welcome you to the NeuroTalk Support Groups.

The other members of this forum will hopefully see your message soon and help you out.

take care.

Welcome midnight atom. :Wave-Hello:

My Advice:
Don't expect a miracle. Follow the advice of Dr. Feigenbaum. You owe a great deal to Dr. Feigenbaum and his team, and to others who have been down this path. Limit your activities, take the time to "heal yourself", and do all you can to assist your body in repairing yourself.
I just put in another 10 hour day at work, building a home for a client here in Oregon. In 2006 I was told to "accept my disability", but I would not. I worked hard to find a "cure", and a solution, and Dr. Feigenbaum restored my life. You also have the opportunity to become "whole". Work at it, prepare yourself for surgery, and behave yourself for the next few months. You too could reap the rewards, as I have.
"Bridges"

Trouble with Tarlovs
 

Hi Eveyone

I have 3 largeTarlovs in sacrum. have kept a log of the gauntlet of dr.s. I have already spoken w/ Dr. f and am waiting for insurance to make thenext move. I am happy to shareware/ anyone in the same situation. *edit*
Thnaks

Scared!
 

Hello everyone. I have suffered with sacral, hip, foot pain for years. I was told it was sciatica or one leg is shorter then the other. A Tarlov cyst was found in my sacral area when I had a cat scan because they thought I was having a gall bladder attack. It is reported that it is 2cm and expanding the sacrum. It says this is a large cyst. I also have many digestive issues, urinary frequency with some leakage. I had an appointment with a nerosurgeon and they reschedualled me for a time I can make. I waited two months for the appointment. The guy has pretty bad reviews anyway so I am going to try to go with someone else..I know someone who has had surgery with Dr. F and this Dr helped her get in touch with him. What can I do in the mean time to help things. Because if my digestive issues I can't handle pain medal. I am overweight and try to walk daily. Is a 2cm cyst large? I am wondering. Too what are the chances of having another cyst in my cervical/thorastic area? I have pain there two. Thanks!

Hello marcyk,

I just wanted to send you a 'Welcome' to the NeuroTalk Support Groups. :Wave-Hello:
Hopefully someone familiar with your symptoms will see your post and send reply.

take care there.

**. I am suffering from Tarlov cysts and would like to know few things. Please could you help me.

Hello, I am going to have surgery with DR Feigenbaum. I have 3 cysts. I heard good result about his surgery and bad noes too. some got more pain, some had leak and the cyst refilled with in a year and two. Some developed new pain. Has anybody had surgery with Dr. Feigenbaum 3 or 2 years ago to tell us about the outcome. Thank you.

My surgery with Dr. Feigenbaum was on November 30, 2010. I can say, without being dramatic, that he gave me back my life. While there are no guarantees with any surgery, I determined that the risks involved were far outweighed by the possible benefits. Please prepare yourself for this procedure. That means doing all you can to cleanse your body of any toxins, (alcohol, tobacco, "junk food") and put in place the support system for when you return home. Follow his suggestions on limiting physical activity, and give you body an opportunity to heal.

I had 5 cysts. Surgery was on October 2012. Two years later, report from my MRI is no cysts or leaks. I would recommend Dr. Feigenbaum to everybody who is considering surgery.

A big Thanks!!
 

I thank you and Bridges for hanging in and giving hope to so many.

rnl50000:winky:

tarlove cyst
 

I am from india Today i have been diagnosed with tarlove cyst in sacral spinal canal with 12*8 mm size on right side
can i go for a surgery? what will be the expences for surgery?

Hi Folks-

Just had surgery with Dr. Feigenbaum in Dallas yesterday for small but multiple Tarlov cysts. (He also sees patients in Cypress.) Am now resting at the hospital. He found 8 cysts and definitely confirmed nerve compression. At least 5 were seen on imaging, but some turned out to be two cysts instead of one. He did laminectomy to treat the cysts and placed a dorsal polymer plate. Surgery took about 2.5 hours plus post op recovery. On waking the numbness I had in both feet is now gone! :):):)

Only have had some nausea, and normal surgical pain that is being decently controlled. Right now they have me restricted on movement to prevent spinal fluid leaks and they have started to progressively elevate my head today. So far so good.

The nursing care at Pine Creek Medical Center is excellent, better than what I've had at most places. The patient to nurse ratio is very low. My nurse has three patients under her care at the moment. The staff here also speak unprompted and highly of Dr. Feigenbaum's care and work to help people to receive appropriate care for Tarlov cysts and the like, many who have been misdiagnosed and undergone some difficult treatments. (One patient suffered an unnecessary vulvectomy BEFORE being helped by Dr. Feigenbaum.)

How some neurologists think that Tarlov cysts are all asymptomatic is absolutely beyond me.

For me, seeing Dr. Feigenbaum and having the surgery Is moving me in the right direction.

If anyone has questions on what I'm undergoing, please feel free to post or PM me.

Hi Amy, I just found out I have 5 Tarlov cyst in my neck and I'm having some pain especially when I sleep. I feel like I put my hand in an outlet and it seems to be affecting my right shoulder too. I have read a lot about it but it seems like there is not much that can be done as most of it be temporary. I heard about this Dr. You went to and I was wondering how things are after the few years. Has it worked? Or are you still having some problems? Please let me know. I an so down about this. I hope it's worked out for you.
Thanks. I appreciate it.

Hi Scarmandy,

I can't help with your questions but I just wanted to send you a "Welcome" to the NeuroTalk Support Groups.

Waiting for surgery with Dr F
 

Hi David.
Was wondering if I could reach out to you about your recovery now that some time has passed since your surgery with Dr. F. New to the site. Still learning it. I would appreciate any one else's input as well.

Thanks.
Lola

Tarlov Cyst
 

PLease I want to call you and talk to you. I have 3 tarlov cysts and I need surgety. I am frighten of taking pain killers. I cannot tolerate them. I suffer now, but I cannot take pills. How long one has to take painkillers after surgery?

I have terrible cause by TC
 

Bridges, may I call you and talk about the surgery. Please could you email me your phone number? Thank you.

You can read Bridges past posts by going to his profile page /statistics , you may find out the information that way.
If he is a farmer & home builder it is his busy season right now, probably why he hasn't been online for awhile..

You can use the search tool also for specific details posted on our forums.
http://neurotalk.psychcentral.com/search.php

The pain pills & time frame after surgery would be something a surgeon could tell you, often it differs for each person, case by case.