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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armenm2121 | @armenm2121 | Sep 19, 2022
In reply to @juliemmm "@armenm2121 is it the ‘disc bulging’? Do you have the actual scan?" + (show)
@juliemmm

@armenm2121 is it the ‘disc bulging’? Do you have the actual scan?

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2 mm Central disc bulging. L5 S1
L4-5 There is a two MM broad based disc bulging into the interior portions of the neural foreman for aminal but no no route compression.

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armenm2121 | @armenm2121 | Sep 19, 2022

On the sacral MRI it says there is no evidence of a perennial cyst. But there was two years ago on my MRI

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armenm2121 | @armenm2121 | Sep 20, 2022
In reply to @colleenyoung "Armenm, I can imagine that this must be confusing to have something show on an imaging..." + (show)
@colleenyoung

Armenm, I can imagine that this must be confusing to have something show on an imaging study and then to not be there in the new MRI findings. This is something you should review with your doctor who knows your medical history and who ordered the testing to fully understand what is going on.

Please note that I removed the picture of the letter you had attached because it contains personal health information and contact information. We recommend not sharing such personal data on public forums for your own security.

When do you have a meeting to discuss with your doctor?

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I will see my doctor sometime … hopefully soon. I will contact my doctor if she doesn’t contact me in the next week.

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frances007 | @frances007 | Sep 20, 2022
In reply to @levar "I had Tarlov Cyst surgery with Dr. Frank Feigenbaum in Feb. 2015. I had three cysts..." + (show)
@levar

I had Tarlov Cyst surgery with Dr. Frank Feigenbaum in Feb. 2015. I had three cysts on my spinal cord. I had the surgery because I have pain in my tailbone area especially when sitting. Prior to Tarlov cyst surgery I had a fusion of my L5 S1 and had my tailbone removed. Unfortunately, the doctor missed bone pieces. The Tarlov Cyst surgery did not relieve my pain. I went on to have the pieces of tailbone removed. It has helped my pain a little. I have just restarted gabapentin and feel a little woozy and tired. I hope the side effects will go away with time. I had taken it before but was also on opioids so I'm not sure it will work by itself.

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I too had a Tarlov cyst that was successfully removed and have had no problems since the surgery in 2018. The recovery period was not prolonged and I felt much better as a result of the removal of the cyst

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bustrbrwn22 | @bustrbrwn22 | Sep 30, 2022
In reply to @sarsarson "I have/had three in my sacral region and, after 9 years of symptoms, ended up having..." + (show)
@sarsarson

I have/had three in my sacral region and, after 9 years of symptoms, ended up having surgery with Dr. Feigenbaum in Texas 16 months ago. I also had a consult with Dr. Welch in Philly. There is a third expert in Sacramento, CA - Dr. Schrot. Having a consult with one or more of the experts is very helpful in understanding what is going on in your body. It is possible that epidural steroid injections can make the condition worse or may even be causal so it may be best to avoid this intervention which is often suggested by doctors who are not knowledgeable about the condition. There are some good scientific articles about Symptomatic Tarlov Cysts. I will find a few and post here. They can be helpful with your doctor. Good pain management is key and believing in yourself - you know your body best!

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@sarsarson. I’m just starting my Tarlov cyst journey. I can’t seem to find the links for the medical articles you mentioned. Could you repost them? Thanks so much.

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2 replies
juliemmm | @juliemmm | Oct 4, 2022

My pain is better after I started taking serrapeptase. I strongly recommend them! There’s nothing to lose to start. After a day I can sit for over an hour, before I couldn’t for longer than ten minutes

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starrh | @starrh | Oct 8, 2022

I too have a couple of tarlov cysts. Very painful and disabiling. They don't understand or don't want to understand the pain. Believe the police brutality caused my cysts. Also I'm in remission for trigeminal neuralgia. It was so bad yet a doctor at the ER stated she had never heard of such pain and I must be faking. I've lost most of hip bone because of cancer.
Anyway, ppl and Drs don't get it.
Also I have had dentist pull a perfectly good tooth that was beside a very badly decayed abscess too leaving me in pain and a shame to smile. Can't win for losing.

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starrh | @starrh | Oct 8, 2022

We need to protest at neurology clinics. Beg them to help with tarlov. Trigeminal neuralgia too.
We should not have to suffer simply because Drs don't care.

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sarsarson | @sarsarson | Oct 8, 2022
In reply to @babykrueger123 "Did you try Dr. Frank Feigenbaum in Dallas, TX? I'm going to see him on August..." + (show)
@babykrueger123

Did you try Dr. Frank Feigenbaum in Dallas, TX? I'm going to see him on August 4th, and then hopefully have surgery to get rid of all my Cysts on my Sacral Joint!!! I have Medicare and a Medicare part C insurance, and it seems like that worked out okay!! Dr. Feigenbaum is a Neurosurgeon who specializes in Tarlov Cysts! I haven't found any other doctor in the United States who does just that!! Good luck to you, I know how painful these Tarlov Cysts can be!!

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There are a couple other doctors who specialize in TC surgical procedures. One is Dr. Rudolph Schrot in Sacramento, CA and another is Dr. William Welch in Philadelphia, PA. I had consults with Dr. Feigenbaum and Welch. Both said the same thing, which was that my cysts were the source of my pain. I appreciated having two opinions.

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1 reply
sarsarson | @sarsarson | Oct 8, 2022
In reply to @bustrbrwn22 "@sarsarson. I’m just starting my Tarlov cyst journey. I can’t seem to find the links for..." + (show)
@bustrbrwn22

@sarsarson. I’m just starting my Tarlov cyst journey. I can’t seem to find the links for the medical articles you mentioned. Could you repost them? Thanks so much.

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Here is one. I’m going to grab a few others for you in a bit

Shared files

Hulens et al (2017) (Hulens-et-al-2017.pdf)

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