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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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Amanda Roe | @amandajro | Jul 14, 2022
In reply to @armenm2121 "The pain starts just 2 minutes into walk paralyzing me hip down both legs with relief..." + (show)
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The pain starts just 2 minutes into walk paralyzing me hip down both legs with relief after sitting down a few minutes, bowel movement and numerous urged to pee. What is next because 98% of doctors do not know anything about it and numerologists are there only to take your money by scheduling appointments. HELP

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I would like to add my welcome along with @jenniferhunter who has responded to you, @armenm2121. I will let you first respond to Jennifer's questions but wanted to let you know that I did move your post into an existing discussion on Tarlov Cysts which you can find here: https://connect.mayoclinic.org/discussion/tarlov-cyst/

I did this to better help connect you with other members like @jenniferhunter @babykrueger123 and @cpidgeon59 who have all been recently active in this discussion.

Like Jennifer, I too was wondering if you are in search of a surgeon?

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cpidgeon59 | @cpidgeon59 | Jul 14, 2022
In reply to @amandajro "I would like to add my welcome along with @jenniferhunter who has responded to you, @armenm2121...." + (show)
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I would like to add my welcome along with @jenniferhunter who has responded to you, @armenm2121. I will let you first respond to Jennifer's questions but wanted to let you know that I did move your post into an existing discussion on Tarlov Cysts which you can find here: https://connect.mayoclinic.org/discussion/tarlov-cyst/

I did this to better help connect you with other members like @jenniferhunter @babykrueger123 and @cpidgeon59 who have all been recently active in this discussion.

Like Jennifer, I too was wondering if you are in search of a surgeon?

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I’m working with Dr Schrot from Sacramento. I have my 2nd Zoom meeting on July 25th with him to review New MRI and Nerve block test.
I’m very happy with my path I have taken with Dr Schrot. 🌺🌺

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babykrueger123 | @babykrueger123 | Jul 15, 2022
In reply to @peacenlove "Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last..." + (show)
Profile picture for peacenlove @peacenlove

Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last month. I received an epidural steroid last year, but no other treatment. Now, symptoms are becoming increasingly worse, including, bowel and bladder issues, neuropathy, migraines. I am studying everything I can, educating docs as I go (so far: GP, GastroEnterologist and Orthopedic Spine surgeon). I am currently searching for a neurosurgeon who has treated these cysts. The Tarlov Cyst Fdn lists 3 docs, in Dallas, Sacramento and Silver Spring, MD. I am in the process of setting up a video call with a surgeon at Metropolitan Neurosurgery in MD (altho the doctor listed on the Foundation's website does NOT take Medicare, so I can't see him). I stumbled on Penn Medicine in PA that lists Tarlov Cyst as one of the conditions they treat, and that seems like a small victory! Are there any other places to look online for a "complete list" of experienced neurosurgeons? I really appreciate a community of folks with whom to share experiences and information. Thank you!

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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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anniebrook | @anniebrook | Jul 17, 2022

I have just found an article about a great Rheumatologist in Vancouver,BC,Canada.With that I read a review from one of his patients. I have been looking for answers for too many yrs to count for my body pain,an MRI shows I have Torlov cysts. The Dr has diagnosed this young woman with something new to me 'nr-AxSpa'. I am so going to to call this Dr's receptionist up tomorrow to ask how long his wait list is and get my GP on this because I am so sick of being fobbed off with "It's just arthritis,It's just your age' .WELL, it wasn't my age when I started with pain in my upper spine/neck at 29yrs old which was 39yrs ago and complete spine pain 11yrs ago If anyone on here has heard of this condition could you please let us know more. I saw one rheumatologist in Victoria,BC who said mt palmoplantar pustulosis, my high Rhuematoid factor blood test, dry eye and bowel problems was just coincidence and nothing to do with each other or my chronic pain.

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francesmharris123 | @francesmharris123 | Jul 17, 2022

I have Tarlov cysts also. I have chronic pain. I have had the pain for 4 years and I recently diagnosed with Tarlov cysts based on a MRI. I am going to see a surgeon Dr Welch in Philadelphia next week to have a consultation. If he agrees about the cysts I am getting a second opinion from a Dr. Feigenbaum in Dallas Texas who specializes in Tarlov cysts for another consultation. These are the only 2 doctors I have found who remove the cysts. I found them online and once I see them I will find out more about the surgery. I am tired of the pain. I still try to live life like I used to the pain makes it very hard.

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francesmharris123 | @francesmharris123 | Jul 27, 2022
In reply to @ablc "Hi - In May 2020, I had a Parathyroidectomy due to Hyperparathyroidism. About a month after..." + (show)
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Hi - In May 2020, I had a Parathyroidectomy due to Hyperparathyroidism. About a month after the surgery, I started having numbness in my feet and hands. The numbness has continued to the present and it is constant. In addition, I had carpal tunnel surgery on my right hand, 6 months after the Parathyroidectomy. According to my surgeons, my feet and hand numbness is not related to either surgery.

Besides the numbness, I have back stiffness - difficulty get up & down to sitting position, pain primarily in my lower back and middle back and sometimes in the center of my back. Also, I still have symptoms related to Carpal Tunnel. Recently, I had an MRI of my cervical spine and the Radiologist noted that there were multiple prominent perineural cysts noted within the neuroforamina bilaterally at the C7-T1 through T2-T3 levels. I have not yet had an MRI of my entire spine.

I have researched Tarlov cysts and understand that the cysts are usually found in the sacral spine. However, I have also read about some (less frequent) Tarlov cysts found in the cervical and lumbar spine areas.

I do have pain throughout my back which causes me discomfort and has limited my quality of life. But I do not have the intense pain that I have read about per persons who have been diagnosed with Tarlov Cysts. I am wondering if anyone less pain than is described in writings or symptoms of Tarlov Cysts? Or perhaps could my situation be related to the start of problems with Tarlov cysts?

I would appreciate any input or suggestions related to my post.
Thank you very much.

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I just went to Dr Welch in Philadelphia and he told me if he did surgery I would have a 90% to 95% chance in decreasing the pain by 50%. He said I would still have a sitting problem. He has done 500 Tarlov cyst surgeries. If I still won’t be able to sit without pain I don’t think I will let him do surgery. I am going to Dallas, Tx to see Dr. feigenbaum who socializes in surgery on Tarlov cysts. If you Google him you can find out a lot about Tarlov Cysts, surgery and recovery. I guess I will find out more about the % surgery will decrease the pain. I hope I get a better response since he is a specialist.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jul 28, 2022
In reply to @ablc "Hi - In May 2020, I had a Parathyroidectomy due to Hyperparathyroidism. About a month after..." + (show)
Profile picture for ablc @ablc

Hi - In May 2020, I had a Parathyroidectomy due to Hyperparathyroidism. About a month after the surgery, I started having numbness in my feet and hands. The numbness has continued to the present and it is constant. In addition, I had carpal tunnel surgery on my right hand, 6 months after the Parathyroidectomy. According to my surgeons, my feet and hand numbness is not related to either surgery.

Besides the numbness, I have back stiffness - difficulty get up & down to sitting position, pain primarily in my lower back and middle back and sometimes in the center of my back. Also, I still have symptoms related to Carpal Tunnel. Recently, I had an MRI of my cervical spine and the Radiologist noted that there were multiple prominent perineural cysts noted within the neuroforamina bilaterally at the C7-T1 through T2-T3 levels. I have not yet had an MRI of my entire spine.

I have researched Tarlov cysts and understand that the cysts are usually found in the sacral spine. However, I have also read about some (less frequent) Tarlov cysts found in the cervical and lumbar spine areas.

I do have pain throughout my back which causes me discomfort and has limited my quality of life. But I do not have the intense pain that I have read about per persons who have been diagnosed with Tarlov Cysts. I am wondering if anyone less pain than is described in writings or symptoms of Tarlov Cysts? Or perhaps could my situation be related to the start of problems with Tarlov cysts?

I would appreciate any input or suggestions related to my post.
Thank you very much.

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@francesmharris123 Getting second opinions (and more) is always a good idea when you are contemplating surgery. Many surgeons don't promise to decrease pain, but instead they try to improve function. There are many factors leading to pain, and scar tissue after a surgery can also contribute to it. Myofascial release is a physical therapy technique to release tight scar tissue and it can relieve pain. I have done MFR before and after surgery and it has helped a lot. Here is our discussion about MFR in the Neuropathy Group.

-Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Do you have an appoinment for a consultation scheduled?

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armenm2121 | @armenm2121 | Aug 2, 2022
In reply to @jenniferhunter "@armenm2121 Hello. I wanted to welcome you to Connect. I am a Mayo spine surgery patient...." + (show)
Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@armenm2121 Hello. I wanted to welcome you to Connect. I am a Mayo spine surgery patient. Now that you have a diagnosis, has your doctor offered or referred you to someone for treatment? I had recently been chatting with another member about Tarlov cysts, and when I did some searching for literature, I found a paper co-authored by by Mayo spine neurosurgeon. I thought you may want to look at that information.

Here is where I posted the information I found.
https://connect.mayoclinic.org/comment/726074/
Are you looking for a surgeon for treatment of this condition?

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I’m waiting for a response from my primary physician on the next step. Physical therapy, Injections, pain medication has not worked and my pain, bowel movement, bladder control has gotten worse. I’m confused, can’t sleep most nights and just tired of explaining my pain to anyone because no one can understand.

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armenm2121 | @armenm2121 | Aug 2, 2022
In reply to @jenniferhunter "@armenm2121 Hello. I wanted to welcome you to Connect. I am a Mayo spine surgery patient...." + (show)
Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@armenm2121 Hello. I wanted to welcome you to Connect. I am a Mayo spine surgery patient. Now that you have a diagnosis, has your doctor offered or referred you to someone for treatment? I had recently been chatting with another member about Tarlov cysts, and when I did some searching for literature, I found a paper co-authored by by Mayo spine neurosurgeon. I thought you may want to look at that information.

Here is where I posted the information I found.
https://connect.mayoclinic.org/comment/726074/
Are you looking for a surgeon for treatment of this condition?

Jump to this post

The Neurosurgeon told me after he viewed my MRI that I had a strait perfect back and he dodged the Tarlov cyst that showed in the MRI and the radiologist noted that fact in his written report

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1 reply
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sarsarson | @sarsarson | Aug 2, 2022

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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