1. < Spine Health

Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

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bluej | @bluej | Aug 5, 2021
In reply to @mfratt "I share your experience with these cysts as I have them also in my sacrum and..." + (show)
@mfratt

I share your experience with these cysts as I have them also in my sacrum and thoracic spin. It’s my understanding that a neurosurgeon can remove them but I haven’t found one as of yet. I plan to see an orthopedic surgeon for my spinal and sacrum issues who has 30 years experience in what my problems are. Hoping he can direct me to someone that can help me. I’m 74 and have a lot of pain when I lay done. A neurosurgeon in the past wrote me off and said that I most likely had them all my life. Not so. It’s frustrating when they write you off. I will keep looking And hope that I find a surgeon who will correct this. If I I have any good news I will post a comment.

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Hello , How are you? have you done an EMG? I had a neurologist order this back on July 21st and just now found out no one does this test. 3 facilities were checked. I am so disappointed. How can a Doctor not know this anyway? What if someone needs to have this done? Very upsetting news for me

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2 replies
mfratt | @mfratt | Aug 5, 2021
In reply to @bluej "Hello , How are you? have you done an EMG? I had a neurologist order this..." + (show)
@bluej

Hello , How are you? have you done an EMG? I had a neurologist order this back on July 21st and just now found out no one does this test. 3 facilities were checked. I am so disappointed. How can a Doctor not know this anyway? What if someone needs to have this done? Very upsetting news for me

Jump to this post

My neurologist did them in his office. Check with an orthopedic doctors office. A pain specialist/PhD in physical therapy often do them. I don’t understand there isn’t anyone in your area. There are orthopedic doctors who do surgery primarily on the foot. Good luck to you.

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1 reply
bluej | @bluej | Aug 6, 2021
In reply to @mfratt "My neurologist did them in his office. Check with an orthopedic doctors office. A pain specialist/PhD..." + (show)
@mfratt

My neurologist did them in his office. Check with an orthopedic doctors office. A pain specialist/PhD in physical therapy often do them. I don’t understand there isn’t anyone in your area. There are orthopedic doctors who do surgery primarily on the foot. Good luck to you.

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If you're looking to have surgery Dr.Feigenbaum in Texas is a Neurosurgeon who has had successful outcomes in removing Tarlov cysts.

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1 reply
mfratt | @mfratt | Aug 6, 2021
In reply to @bluej "If you're looking to have surgery Dr.Feigenbaum in Texas is a Neurosurgeon who has had successful..." + (show)
@bluej

If you're looking to have surgery Dr.Feigenbaum in Texas is a Neurosurgeon who has had successful outcomes in removing Tarlov cysts.

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Thank you.

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rkbunn | @rkbunn | Oct 20, 2021
In reply to @qball2019 "I ended up with multiple Tarlov cysts in my sacral area after a slip and fall..." + (show)
@qball2019

I ended up with multiple Tarlov cysts in my sacral area after a slip and fall 15 years ago. The cysts were never mentioned to me until 2018 even though they were there the whole time. Doctors generally tell you they don't cause any issues and refuse to discuss it any further. I had to go through numerous doctors to find just one that would consider that, if they weren't able to figure out what was causing my pain, that these cysts might be the issue. Ridiculous to have to go through all of that but that's what happened to me. The pain and symptoms robbed me of a decent life with my husband, kids, and other family. I currently also have a very hard time standing, sitting, walking, bending, etc.and that is just the tip of the ice burg. I can't even sit on my right butt cheek because of all the nerve pain. The symptoms have just snowballed and my health has just plummeted over the last 6 months.

You need to push the doctors and keep going until you find one that will acknowledge these things. They may make you out to be crazy but you're not and there is help out there. They DO cause issues and you are entitled to have them treated. I don't want to read about other people who have had to live with the pain and symptoms as long as I have. I want people to get the help the need before getting to the point that I am at. I was told that there are only 3 doctors in the U.S. that specialize in treating these things. Dr. Feigenbaum at Pine Creek Medical Center in Dallas, TX has the most experience and positive outcomes. I'm currently waiting for a surgery date. The surgery is a big deal and can take 2+ years to recover because nerves grow slowly. Mos. t people report relief of symptoms soon after surgery.

Hope this helps you a little bit. If you would like any other info. look up The Tarlov Cyst Foundation. If there is anything else I may be able to help you with please feel free to ask. Good luck to you and take care!!

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Hello! I realize this is an older post. Did you ever have surgery for you Tarlov Cyst. I have them at S2 and S3. It is affecting my quality of life. I am Awaiting calls from Dr F in Dallas as well as Dr Schrot in Sacremento.

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1 reply
peacenlove | @peacenlove | Oct 21, 2021
In reply to @bluej "has anyone NOT had surgery ? and if not, how do you manage symptoms?" + (show)
@bluej

has anyone NOT had surgery ? and if not, how do you manage symptoms?

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I have a 2.5cm tarlov cyst at S2. Finally saw a Neurosurgeon's NP in May. She did NOT recommend surgery. Her comments: cyst is in a high risk area, an enervated area, where there is a lot happening. Could result in permanent incontinence. She recommends learning if there is a "mass effect on the S3 complex", or if there is a nerve root issue. See Urologist and Neurologist before seeing a surgeon. . . then I moved across the country. Starting over in the search for docs who can help, but no longer even looking for a surgeon. Pain is there, on and off, most days. I treat it with thc, stretching, breathing and movement. That is, change activity and positions throughout the day. Sit, then walk, then stand, then lie down, then walk, then sit and keep it going all day. I am interested in learning from all of you!

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qball2019 | @qball2019 | Oct 23, 2021
In reply to @rkbunn "Hello! I realize this is an older post. Did you ever have surgery for you Tarlov..." + (show)
@rkbunn

Hello! I realize this is an older post. Did you ever have surgery for you Tarlov Cyst. I have them at S2 and S3. It is affecting my quality of life. I am Awaiting calls from Dr F in Dallas as well as Dr Schrot in Sacremento.

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I did finally have my surgery in Dec 2020. You can click on my @qball2019 and it will take you to my posts. I have details of the surgery there. If you have any questions please don't hesitate to ask. Hope your call with Dr. F and Dr. Schrot goes well. They are both very well known for their expertise in Tarlov cyst surgery.

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qball2019 | @qball2019 | Oct 23, 2021

Tarlov cysts most certainly DO cause problems. Doctors don't know much about them because I guess they were just merely mentioned to them in med school. That is what Reta from the Tarlov Cyst Disease Foundation told me. Contact Dr. Frank Feigenbaum in Dallas, TX or Dr. Schrot in CA. They are the experts.

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qball2019 | @qball2019 | Oct 23, 2021
In reply to @bluej "I suppose I should go back to where it all started. 2010 had an MRI for..." + (show)
@bluej

I suppose I should go back to where it all started. 2010 had an MRI for nerve pain in foot. Cysts found on right and left sacral region. Have seen many doctors for problems to which they cannot conclude or say is connected/related to the cysts. I do, we do, we know our bodies. Speed up to July 21st I see another neurologist after having another MRI , he can't help but wants me to go for EMG which I had done ordered from podiatrist but wrong body parts. Soooo, they cannot even find a neurologist to do this EMG. My story is quite long but I will say I have done a phone consult with Dr. Feingenbaum 2 years ago. I am a candidate for surgery. I cannot get medical clearance to go out of state because of my Insurance plan. Let's talk about the mental health effects this has knowing one has to live with something in the body that doesn't belong and is growing. I am scared.

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@bluej You should be able to go out of state. If your insurance company doesn't have someone that specializes in the Tarlov cysts surgery then you can file a grievance (after being denied). If they still deny you contact Reta from the Tarlov Cyst Disease Foundation. She will help you out with it. I had to fight and go through this for 3 years before my insurance company would finally cover it. I can say it was worth the fight. I figured I could either lay around and keep getting worse or I could go through with the surgery and hopefully get better. Like any back or nerve surgery there is the risk that it could be better, could be worse, or stay the same. This is because everyone is "wired" differently and everyone's body responds differently. I had 5 cysts and all 5 of my sciatic nerves were compressed for years. Prior to surgery I couldn't sit on my right butt cheek, stand or walk for more than a few minutes and now use a cane, ended up with neuropathy in both legs, allodynia, hyperalgesia, and bowel and bladder issues. The injury that caused the cysts was way back in 2003 but I wasn't diagnosed until 2018. They told me I was an extreme case and that I should expect some permanent nerve damage because of the length of time the nerves were compressed. I'm 11 months into the 2 year recovery (only because nerves grow really slow). I can't say I'm any better yet but I have just over a year to go in the recovery. One of my doctors also had one Tarlov cyst and she had the surgery done by Dr. Feigenbaum. She has recovered 80%. Large or small, these cysts can cause so much pain and life changing problems. It's definitely worth the fight to have a consultation with Dr. Feigenbaum or Dr. Schrot at the very least. I don't want anyone to end up like me. Best of luck to you and if you have any questions please don't hesitate to ask!

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qball2019 | @qball2019 | Oct 24, 2021
In reply to @mfratt "I share your experience with these cysts as I have them also in my sacrum and..." + (show)
@mfratt

I share your experience with these cysts as I have them also in my sacrum and thoracic spin. It’s my understanding that a neurosurgeon can remove them but I haven’t found one as of yet. I plan to see an orthopedic surgeon for my spinal and sacrum issues who has 30 years experience in what my problems are. Hoping he can direct me to someone that can help me. I’m 74 and have a lot of pain when I lay done. A neurosurgeon in the past wrote me off and said that I most likely had them all my life. Not so. It’s frustrating when they write you off. I will keep looking And hope that I find a surgeon who will correct this. If I I have any good news I will post a comment.

Jump to this post

There are really only 3 neurosurgeons in the U.S. that specialize in Tarlov cysts so I would strongly suggest at least getting a consultation. Dr. Feigenbaum in Dallas, TX is the world's leading surgeon for Tarlov cysts and it is said that he had the best outcomes. I have read about people that have had the surgery done by other surgeons and their outcomes were not good to say the least. You will find that most surgeons and doctors will write you off saying these cysts don't cause issues. Most of us have the same issues. Don't believe them and don't get discouraged. As soon as you get the feeling the doctor doesn't believe the cysts cause issues don't waste any more time on them. Move on. When you see a new doctor ask them right out if they are willing to learn about the Tarlov cysts and work with you. I look at it like I'm interviewing them. After all, you are the one who is paying them to treat you. Best of luck to you!

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